Patient Pathway Mapping Project

Transcription

1 Border/East Hume Cancer Network Patient Pathway Mapping Project Lung tumour stream: non-small cell lung cancer July 2013 Lung PPM Report Page 1 of 102

2 TABLE OF CONTENTS 1. EXECUTIVE SUMMARY AIM AND OBJECTIVES PROJECT SCOPE Border/East Hume Cancer Network Patient Pathways Mapping Project METHODOLOGY Operationalising the Patient Management Framework Participation of health professionals Participation of consumers Ethics approval Retrospective review of medical records Patient flow data analysis Assessment of scope of clinical practice Presentation of results RESULTS Data collected Participation of health professionals Participation of consumers Retrospective review of medical records Patient flow data analysis Supportive care Multidisciplinary care Profile of Border/East Hume MDTMs Number of patients presented at the MDTMs Assessment of scope of clinical practice Generic successes and gaps in the care pathway across all tumour streams Specific successes and gaps in the pathway for lung cancer care RECOMMENDATIONS Multidisciplinary Care Care coordination Supportive care Reducing Unwanted Variations in Care Lung PPM Report Page 2 of 102

3 7. DISCUSSION ACKNOWLEDGMENTS REFERENCES APPENDICES Appendix 1: Patient Management Frameworks toolkit Appendix 2: Supplementary Health Professional Interview Questions Appendix 3: Consumer Participant Questionnaire Appendix 4: Background to the Patient Pathways Mapping Project A4.1 Frameworks to guide cancer reform in Victoria A4.1.1 Cancer Services Framework for Victoria A4.1.2 Victorian Cancer Action Plan A4.2 The Victorian Integrated Cancer Services A4.3 Establishment of tumour streams A4.4 Patient Management Frameworks A4.5 The four priority service improvement areas for statewide reform A4.5.1 Multidisciplinary care A4.5.2 Care coordination A4.5.3 Supportive care A4.5.4 Reducing variations in care Appendix 5: Profile of the Hume Region A5.1 Geographic coverage A5.1.1 Overview of the Hume cancer networks A5.1.2 Sub regions within the Hume cancer networks A5.2 Population A5.3 Cancer Profile Lung PPM Report Page 3 of 102

4 LIST OF TABLES Table 1: Tumour types identified as priority areas for the Border/East Hume Cancer Network Table 2: Tumour types identified as priority areas for the West Hume Cancer Network Table 3: Incidence of lung cancer in the 5-year period by LGA for Hume region, Albury and Southern/Border NSW Table 4: Patient flow analysis for non-small cell lung cancer Table 5: MDTMs in the Border/East Hume Cancer Network Table 6: Number of patients presented at the Border/East Hume Cancer Network MDTMs Table 7: Border/East Hume Cancer Network scope of clinical practice checklist Table 8: Generic successes and gaps in the care pathway across all tumour streams Table 9: Specific successes and gaps in meeting the PMF for lung cancer care Table 10: Recommendations for multidisciplinary care Table 11: Recommendations for care coordination Table 12: Recommendations for supportive care Table 13: Recommendations for reducing unwanted variations in care Table 14: Victorian and NSW LGAs considered in this Patient Pathways Mapping Project Table 15: Hume region, Albury and Southern/Border NSW population forecasts Table 16: Hume, Albury and Southern/Border NSW population change Lung PPM Report Page 4 of 102

5 LIST OF FIGURES Figure 1: Schematic representation of the optimal treatment pathway for the lung tumour stream Figure 2 : Supportive care referrals Figure 3: Systematic approach to quality in cancer services Figure 4: Map of the Victorian Integrated Cancer Services Figure 5: The seven steps of the patient journey identified in the PMFs Figure 6: Victoria s model for multidisciplinary care Figure 7: Model for safety and quality in Victorian cancer services Figure 8: Map of the Hume RICS West Hume and Border/East Hume Cancer Networks Figure 9: Map of the Local Government Areas from Victoria and NSW that form part of the broader population catchment for cancer services in the Hume region Figure 10: Primary Care Partnership divisions in the Hume region Figure 11: Total cancer incidence by LGA, Hume region, Albury and Southern/Border NSW for the 5-year period Figure 12: Average annual cancer incidence by sex and age group, Hume region and Albury for the 5-year period Figure 13: Average annual cancer mortality by sex and age group, Hume region and Albury for the 5-year period Figure 14: Average annual cancer incidence by sex and cancer type in the Hume region for the 5-year period Figure 15: Total cancer incidence by sex and cancer type in Albury for the 5-year period Figure 16: Average annual cancer mortality by sex and cancer type in the Hume region for the 5-year period Figure 17: Total cancer mortality by sex and cancer type in Albury for the 5-year period Lung PPM Report Page 5 of 102

6 1. EXECUTIVE SUMMARY The Victorian Department of Health (DH) has a significant cancer reform agenda that aims to improve planning and delivery of treatment and support to patients so that appropriate care is provided in a timely manner as close to the patients home as possible. 1 Two leading policy documents guiding Victoria s cancer reforms are the Cancer Services Framework and Victoria s Cancer Action Plan (VCAP). The Cancer Services Framework identified structures and processes that support optimal cancer care, including the development of the Patient Management Frameworks (PMFs) in 2006 to guide the delivery of consistent cancer care for a range of tumour streams. 2 The PMFs were developed to provide a consistent statewide approach to care management across the ten identified tumour streams and are intended to improve patient outcomes by focussing discussion on the critical steps of the patient journey in order to identify priority areas for improvement. They aim to reduce unwanted variation in care and describe optimal referral pathways for cancer care from diagnosis to endof-life care, inclusive of treatment and supportive care. This project aimed to identify the successes and gaps in the implementation of the PMFs across all stages of the patient journey for each of the four priority service improvement areas for statewide reform (multidisciplinary care, care coordination, supportive care, reducing unwanted variation in practice). Further information about the background to the conduct of this project, including a detailed description of the Patient Management Frameworks and the process with which they were evaluated in this project is provided in Appendix 4 and 5. Project data were collected via a variety of mechanisms including consumer questionnaires and interviews, health professional interviews, and data analysis. The successes and gaps in service provision were identified from these data and are presented in Section 5 of this report. Based on these findings, recommendations for cancer service improvement were developed and prioritised, as presented below. Multidisciplinary Care Number Recommendation Short-term Long-term 1 The feasibility of establishing a local lung cancer MDTM is further explored, including the potential to remotely link in a cardiothoracic surgeon from a tertiary hospital 2 Hume RICS continues to contribute to local and statewide initiatives to improve multidisciplinary team meeting administration, including to support the implementation of sustainable, standardised software and to contribute to statewide minimum datasets 1 Clinical Networks: A framework for Victoria 2008 Department of Human Services 2 Patient management frameworks 2006 Department of Human Services Lung PPM Report Page 6 of 102

7 Care coordination Number Recommendation Short-term Long-term 1 Collaborate with metropolitan health services to identify opportunities to improve referral processes and pathways for Hume patients requiring endo-bronchial ultrasound 2 Health professionals and consumers should be well informed about the range of different treatment and supportive care options, particularly those available close to the patient s home 3 Hume RICS continues to promote engagement with the community health sector, and Home and Community Care (HACC) services, particularly in relation to linking rural and remote patients with their local support services where possible 4 Relevant federal and statewide strategies working towards improving communication channels between all health professionals, including GPs, should be promoted widely (such as the Human Services Directory (HSD) and e-referral 5 Communication systems are improved to ensure that patient medical information is available in a timely manner to all relevant clinicians, including the GP 6 Transition of care (discharge planning) processes should be improved to promote continuity of care, particularly between metropolitan and regional/rural health services, private hospitals and primary health services, and also between specialist cancer services, primary health and palliative care 7 The potential barriers in accessing appropriate services should be identified and strategies developed to address them 8 Protocols are developed and implemented to ensure that patients being transferred from a metropolitan treatment centre back to the Border/East Hume Cancer Network are referred to the relevant local support nurse/cancer Care Coordinator in a timely manner 9 Processes are established to promote the development of cancer care management plans and palliative care pathways (as guided by the Goulburn Valley Health End of Life project) 10 Review of lymphoedema models of care, including early intervention, are supported 11 Resources are developed for GPs that support appropriate and timely referral of people diagnosed with cancer to specialist cancer services and community services as appropriate Lung PPM Report Page 7 of 102

8 Supportive care Number Recommendation Short-term Long-term 1 Health services are supported to ensure that all newly diagnosed cancer patients have access to supportive care screening (including the utilisation of a screening tool developed specifically for patients aged over 70 years) and that these results are documented in the patient s central medical record 2 Supportive care screening is implemented at designated follow up intervals, including recurrence 3 The importance of supportive care discussion within a multidisciplinary team meeting is promoted and that this discussion is documented 4 Health services are supported to develop service models which include prevention, early intervention, treatment and support for cancer patients. Such services may include lymphoedema services, speech therapy, dietetics, counselling, PEG feeding and home oxygen 5 Hume RICS continues to provide and promote practical support and information for consumers (including the Hume RICS website, tailored standardised information packs and professional development sessions for specialist cancer staff) and continues to focus on improving information and access to travel, accommodation and financial supports 6 Options for access to pastoral care should be investigated and promoted 7 Partnerships with palliative care services are enhanced and a health promotion approach to palliative care is supported, including advocating for the importance of early intervention 8 Transport, financial, and emotional support continue to be raised as issues for rural communities in accessing oncology treatment 9 Continue to raise awareness of the specific supportive care needs of priority population groups including Aboriginal and Torres Strait Islander, adolescent and young adults, and culturally and linguistically diverse communities 10 A model is developed to facilitate increased access to psychosocial oncology support for public and private patients in community and inpatient settings across both sides of the NSW/Victorian border 11 All patients who are transferred to a regional medical facility from a metropolitan one should be referred to a CCC to ensure family centred supportive care is maintained Lung PPM Report Page 8 of 102

9 Reducing Unwanted Variations in Care Number Recommendation Short-term Long-term 1 Medical oncology education for small rural health services and GPs should be facilitated, including pain and side effect management for cancer patients 2 Systems for timely access to allied health services and practical supports are developed, particularly for patients in private hospitals 3 In consultation with the Hume Medicare Local, Hume RICS provides GPs with access to oncology/specialist referral criteria and pathways, as informed by the findings of the West Hume Cancer Network GP project 4 Waiting times around access to theatres should be investigated to better understand the implications and impacts 5 Earlier referral processes from metropolitan settings to rural radiation services are in order to avoid delays experienced by patients in accessing local radiotherapy services 6 Support the work undertaken by the Albury Wodonga Regional Cancer Centre Consortium to advocate for improved access to public medical oncology and radiotherapy 7 Further investigate the inequities in financial supports (including subsidies for dietary supplements, HACC services, community/district nursing) to identify the differences for public/private patients and NSW/Victorian residents 8 An education needs analysis should be conducted in order to develop and facilitate appropriate professional development for a broad range of health professionals involved in the care of patients with cancer; particularly as related to issues such as death and dying, treatmentrelated sexual issues, health literacy and self care 9 Support health services in exploring opportunities to implement and/or further extend their use of CHARM to improve systems relating to safety, quality and efficiency Lung PPM Report Page 9 of 102

10 2. AIM AND OBJECTIVES The aim of the Patient Pathway Mapping Project was to identify opportunities for whole system improvement and development, for consistent and coordinated cancer care across the Hume Region. The objectives of this project were to use the Patient Management Frameworks (PMFs) to guide planning for service improvement activities by: Identifying the differences between the actual patient pathway and the optimal patient pathway as described by the Patient Management Frameworks, for each selected tumour stream Identifying strengths, gaps and duplications in the actual pathway of patients for each tumour stream Providing recommendations to support improvements focusing on delivering optimal treatment and support to patients, at each step of the care pathway Lung PPM Report Page 10 of 102

11 3. PROJECT SCOPE 3.1 Border/East Hume Cancer Network The Border/East Hume Cancer Network is a cross-border collaboration of public and private health services and clinicians, as shown in Appendix 5. Patients who attend these services are drawn from a large regional population of close to 250,000 from the Victorian Local Government Areas (LGA) of Wodonga, Indigo, Towong, Wangaratta, Alpine, Mansfield and Benalla, and from the Murray region of southern NSW. The principal public hospitals providing cancer services in the Border/East Hume Cancer Network are: Albury Wodonga Health (Albury and Wodonga campuses) AWH Northeast Health Wangaratta NHW The principal private (Ramsay Health) hospitals providing cancer services are: Albury Wodonga Private Hospital AWPH Murray Valley Private Hospital MVPH Wangaratta Private WP Albury Wodonga Health (AWH) and Northeast Health Wangaratta (NHW) are publically funded services and provide diagnostic, surgical, chemotherapy and allied health services (please note that for AWH chemotherapy is only available at the Albury campus). Depending on the procedure/treatment regime, privately insured or Department of Veteran s Affairs (DVA) patients may elect to have surgery and/or chemotherapy at one of the private hospitals listed above. Other smaller rural hospitals across the Border/East Hume Cancer Network may provide inpatient or outpatient supportive care services to cancer patients. In the Border/East Hume Cancer Network, radiation oncology and medical oncology are supplied by private providers. Radiotherapy is provided by Radiation Oncology Victoria (ROV) at the Murray Valley Radiation Oncology Centre in Wodonga. ROV is a private provider of radiotherapy services across metropolitan Melbourne and country Victoria. Border Medical Oncology (BMO) is a private practice that provides medical oncology consultancy in Wodonga. A public medical oncology registrar and Oncology Nurse Practitioner are also employed by Albury Wodonga Health and they work in partnership with the medical oncologists at BMO. The Border/East Hume Cancer Network has also attracted the services of many generalist private medical practitioners, including surgeons, pathology and radiology agencies, an oncology pharmacist, psychologists and allied health providers (including physiotherapists, dietitians, lymphoedema therapists, continence nurses), who contribute substantially to cancer care. With respect to supportive services in the Border/East Hume Cancer Network, the Cancer Institute NSW provides funding for a 1.0FTE Cancer Care Coordinator, a 0.5FTE Multidisciplinary Team Meeting Administrator and a 0.6FTE Oncology Social Worker. Hume RICS also provides funding for a 0.5FTE Multidisciplinary Team Meeting Administrator in the Border/East Hume Cancer Network (to enable the cross-border position to be employed on a full-time basis) and a 0.8FTE Cancer Resource Nurse. There are Breast Care Nurses in Albury/Wodonga, Benalla and Alpine (funded by the McGrath Foundation) and in Lung PPM Report Page 11 of 102

12 Wangaratta (funded by Northeast Health Wangaratta). The Leukaemia Foundation funds a Support Coordinator for Albury/Wodonga and surrounds. A number of surgeons in private practice also employ nurses to provide support to their patients. Palliative care clinical teams are located at Albury Wodonga Health (Wodonga campus), Northeast Health Wangaratta and Mercy Health Albury. There is a community-based consultancy service provided by the NSW Murrumbidgee Local Health District and Ovens and King Community Health/Gateway Health in Victoria, including dedicated Clinical Nurse Consultant positions. There are also community based palliative care services provided by District Nurses/Home Nursing in rural areas such as Alpine, Corryong, Benalla, Tallangatta and Mansfield. Visiting palliative care physicians attend from NSW (from Sacred Heart Hospital in Sydney) and Victoria (from St Vincent s Hospital Melbourne). Stakeholders in the Border/East Hume Cancer Network have crafted a collaborative model of regionally based health care to service all in the region who seek cancer care. This collaboration was led in the mid s through the Border Cancer Collaboration who developed partnerships and processes to reduce the impediments faced by those accessing cancer services caused by state and other jurisdictional boundaries. There are also linkages to metropolitan services and clinicians in Melbourne and Sydney and rare/complex cases are referred to these services as required. Whilst the Border/East Hume Cancer Network hosts a number of local Multidisciplinary Team Meetings (described in further detail in Section 5.4), remote linkages to metropolitan meetings are also available. 3.2 Patient Pathways Mapping Project Patient pathways mapping in the Border/East and West Hume Cancer Networks were undertaken for the tumour streams as shown in Table 1 and Table 2. The Border/East and West Hume Clinical Reference Groups, as well as the respective Network committees (who act as advisory bodies to Hume RICS) were consulted to identify the top priority tumour types in each network. These tumour types were then allocated to their corresponding tumour streams, and mapped against the relevant PMFs (as presented in Table 1 and Table 2). It is important to note that the primary focus of this project was on the services provided within the Border/East Hume Cancer Network. Whilst consideration was given to the experiences of patients required to travel outside of the region for components of their care, this was not a main focus of the project and detailed investigation of the services provided outside of the region (including at metropolitan sites) was not conducted. Lung PPM Report Page 12 of 102

13 Table 1: Tumour types identified as priority areas for the Border/East Hume Cancer Network Tumour type Tumour stream PMF Ovarian Gynaecological Ovarian Melanoma Skin Melanoma Larynx, pharynx and oral Head & Neck Larynx, pharynx and oral Prostate Genitourinary Prostate Testicular Genitourinary Testicular Pancreatic Upper Gastrointestinal Pancreatic Colon & Rectal Colorectal Colon & Rectal Intermediate grade Non-Hodgkin lymphoma Haematological Intermediate grade Non-Hodgkin lymphoma Non-small cell lung Lung Non-small cell lung Cerebral metastases Central Nervous System Cerebral metastases Malignant glioma Central Nervous System Malignant glioma Table 2: Tumour types identified as priority areas for the West Hume Cancer Network Tumour type Tumour stream PMF Non-small cell lung Lung Non-small cell lung Colon & Rectal Colorectal Colon & rectal Breast Breast Breast Prostate Genitourinary Prostate Ovarian Gynaecological Ovarian Melanoma Skin Melanoma Larynx, pharynx and oral Head & Neck Larynx, pharynx and oral Intermediate grade Non-Hodgkin lymphoma Haematological Intermediate grade Non-Hodgkin lymphoma Lung PPM Report Page 13 of 102

14 4. METHODOLOGY This project compared the actual patient treatment pathway with the optimal pathway as described in the Patient Management Framework Lung tumour stream: non-small cell lung cancer. Project data were collected via a variety of mechanisms including consumer questionnaires and interviews, health professional interviews, and data analysis. 4.1 Operationalising the Patient Management Framework A schematic representation of the optimal treatment pathway for the lung tumour stream was developed by the Project Team, based on the information provided in the PMF and is presented in Figure 1. This was used alongside the project data collection tools in order to identify the key steps of the optimal treatment pathway, and consequently the gaps and successes of the actual patient pathway. Lung PPM Report Page 14 of 102

15 Figure 1: Schematic representation of the optimal treatment pathway for the lung tumour stream 3 3 Patient management framework Lung tumour stream: non-small cell lung cancer 2006 Department of Human Services Lung PPM Report Page 15 of 102

16 4.2 Participation of health professionals Individual semi-structured interviews were conducted with clinicians and other health professionals to identify the successes and gaps in the implementation of the PMFs. The interview tool that was utilised for this project was based on the Department of Health resource Patient Management Frameworks toolkit (attached as Appendix 1). It incorporated the key elements of multidisciplinary care, care coordination, supportive care and variations in care, at each stage of the cancer journey from diagnosis, through to end of life care. Supplementary health professional interview questions were also utilised (attached as Appendix 2). 4.3 Participation of consumers Consumer participation in the project was designed as an opt in approach. Flyers were distributed to numerous health service sites including general practitioners, regional hospitals and community health centres. The recruitment strategy also included circulating invitations to regional cancer support groups and the Hume RICS Community Participation Network, as well as advertising through local newspapers and other media. Consumers were offered the opportunity to participate in an individual interview, complete a questionnaire or participate in a small group forum. The questionnaire and interview questions that were developed for this project (attached as Appendix 3) were informed by previously utilised patient surveys Ethics approval Ethics applications were submitted to the Albury Wodonga Health Human Research Ethics Committee (HREC) and the Northeast Health Wangaratta HREC. The ethics submission to Albury Wodonga Health HREC included project research approval for Albury Wodonga Health (both Albury and Wodonga hospital campuses), Albury Wodonga Private Hospital, Murray Valley Private Hospital, Goulburn Valley Health and Kilmore District Hospital. The submission to Northeast Health Wangaratta HREC included project research approval for this site only. The purpose of the HREC submissions was to seek approval for Hume RICS to advertise for the recruitment of potential participants (cancer patients) in hospital settings within the Hume Region, and to conduct subsequent interviews, questionnaires and small group forums to collect information about their cancer care experiences. 4.4 Retrospective review of medical records Within the Victorian Admitted Episodes Dataset (VAED), ICD-10 diagnostic and procedural codes were used to identify a sample of patients with a new cancer diagnosis that had undergone treatment. Patients were selected from the datasets available for the 2009/10 and 2010/11 financial years. Up to 25 patients were randomly selected for each nominated tumour stream from each of the four Hume sub-regions. The actual number of patients reviewed was fewer for the low volume cancers according to the number of diagnoses within the specific period. 4 National Survey of NHS Patients Questionnaire ( ), Centre for Social Research, Picker Institute Europe 5 Victorian Cancer Patient Experience Survey Tool 2011, Victorian Department of Health Lung PPM Report Page 16 of 102

17 A proforma was developed to record standardised information from the medical records, however as described in more detail below, there were major limitations in utilising information extracted from medical records. It should also be noted that the information retrieved from the medical records for the purposes of this project differed to that collected as part of the Victorian Cancer Service Performance Indicator reports. It was intended that information extracted from the medical record would be collected regarding presentation at MDTM, evidence of correspondence with General Practitioners, details of treatment and supportive care referrals. However, it was often difficult to generate a thorough and accurate representation of the patients entire care pathway based on the medical record review. This was due to patient care often being delivered across multiple sites in the Border/East Hume Cancer Network, which has a mix of public/private services, each with their own individual medical record. By examining the medical record at the site where the patient had the bulk of their treatment (eg. chemotherapy), it was often not possible to determine all of the relevant treatment and referrals initiated before they were admitted for chemotherapy (eg. from the site where they had their surgery) etc. Ideally patients would have been followed longitudinally through their care pathway across multiple health service sites, but this was not possible in the absence of a linked dataset that enabled patients to be easily tracked through the system. Therefore, a decision was made to exclude the majority of the information obtained from the medical record review due to concerns the data did not accurately represent the patient journey. However, information obtained from the medical record review regarding supportive care referrals was felt to be representative enough in order to be summarised for inclusion in this report, represented as Fitch s tiered approach to providing supportive care. 4.5 Patient flow data analysis The VAED was again utilised to analyse patient flow of local residents to service providers both within and external to Hume RICS during the 2009/10 and 2010/11 financial years. The dataset was used to identify local residents of each of the four Hume sub-regions, then analysed to determine the service site at which these patients had an inpatient episode of care. A further analysis was completed to determine the type of care delivered by ICD-10 diagnostic and procedural codes for each of the nominated tumour streams. Unfortunately, as the Albury Wodonga Health- Albury Campus does not yet submit data in to the VAED, analysis of this activity was unable to be undertaken. Inpatient activity delivered at this service site is therefore not able to be determined and is not included in the analysis. It is anticipated that during Albury campus will develop systems and procedures in order to be able to report their data to the VAED. 4.6 Assessment of scope of clinical practice The Patient Management Frameworks provide clear guidelines regarding the scope of clinical practice in order to provide quality and safe practice. As described in the PMFs, scope of practice reflects both the expertise and experience of the individual as well as the organisational capability for the provision of safe, Lung PPM Report Page 17 of 102

18 high quality cancer services. The guidelines presented in the PMF were used to develop a checklist that was completed for each of the health service sites within the Border/East Hume Cancer Network to determine their ability to provide the recommended level of service and expertise. 4.7 Presentation of results As described in Appendix 4, the focus of this Patient Pathways Mapping Project was to investigate the success with which the PMFs have been implemented at each step of the patient pathway, across each of the four key priority areas of: multidisciplinary care care coordination supportive care reducing unwanted variation in practice (quality monitoring and support) Accordingly, the successes and gaps in the care pathway for lung (non-small cell) cancers in the Border/East Hume Cancer Network were described across these four priority areas. There were also a number of successes and gaps identified that were relevant across all tumour streams, and these have been presented separately to the tumour-specific successes and gaps. The results have been presented in a tabular format and directly reference the steps in the patient pathway listed in the PMF. Whilst there are seven steps of the patient pathway presented in the PMF, the focus of this project centred primarily around the six stages from initial diagnosis and referral through to end of life care. Recommendations across the four priority areas were developed and circulated to the Hume RICS Border/East Hume Clinical Reference Group for comment and classification as short-term or long-term activities. Lung PPM Report Page 18 of 102

19 5. RESULTS This section presents the results of the Patient Pathways Mapping Project in the Border/East Hume Cancer Network. Table 3 presents data specifically related to the incidence of lung cancer in the five year period for LGAs in the Victorian Hume region, as well as the NSW LGAs that are part of the broader population catchment for cancer services provided in the Hume region. Presented in this table are the data for Albury (which has been combined with Wodonga), as well as the combined incidence data for the LGAs of Corowa, Greater Hume, Berrigan, Deniliquin, Murray, Conargo, Jerilderie and Urana (collectively referred to in this report as Southern/Border NSW). Please note that Victorian LGA incidence data was sourced from the Cancer Council Victoria and NSW LGA incidence data was sourced from NSW Cancer Registry. Across Hume, Albury and Southern/Border NSW LGAs, there were a total of 990 cases of lung cancer for the five year period , which equates to approximately 198 cases per year. Table 3: Incidence of lung cancer in the 5-year period by LGA for Hume region, Albury and Southern/Border NSW 6 LGA Cases Albury/Wodonga 171 Southern/Border NSW* 171 Indigo 46 Wangaratta 78 Alpine 40 Towong 19 Mansfield 14 Benalla 52 Greater Shepparton 115 Mitchell 78 Moira 122 Murrindindi 49 Strathbogie 35 Total for five-year period 990 * Combined figures for the LGAs of Corowa, Greater Hume, Berrigan, Deniliquin, Murray, Conargo, Jerilderie and Urana 6 Data obtained from Cancer Council Victoria and NSW Cancer Registry Lung PPM Report Page 19 of 102

20 5.1 Data collected Data for this project were collected from a variety of sources, including health professional interviews, consumer questionnaires and interviews, medical record reviews, health service checklists and data analysis Participation of health professionals A total of 28 clinicians and health professionals were interviewed for the entire Patient Pathways Mapping Project (across all 9 tumour streams for the Border/East Hume Cancer Network), including medical oncologists, radiation oncologists, surgeons, physicians, general practitioners, registrars, oncology nurses, Nurse Unit Managers, Nurse Practitioners, Cancer Care Coordinators, research nurses, palliative care nurses, social workers, dietitians and other nurses who are involved in the care of cancer patients Participation of consumers For the entire Patient Pathways Mapping Project (across all 9 tumour streams for the Border/East Hume Cancer Network), a total of 43 consumers were interviewed (26 completed a written questionnaire, 5 participated in a small group forum and 12 consumers participated via a phone interview) Retrospective review of medical records A total of 42 medical records were reviewed for patients who had received treatment specifically for lung cancers in Upper and Central Hume. 5.2 Patient flow data analysis Table 4 below illustrates the number of patients who contributed to hospital inpatient episodes of care for residents of the Hume region in the and financial years. This specifically relates to residents of the Upper Hume sub region (Wodonga, Indigo and Towong LGAs) and Central Hume sub region (Wangaratta, Alpine, Mansfield and Benalla LGAs) but does NOT include residents of NSW. The diagram shows the number of patients who are residents of the Upper Hume and Lower Hume sub regions who received components of their care both within the Hume region (Central Hume, Upper Hume, Goulburn Valley and Lower Hume sub regions), and outside the Hume region (LMICS, NEMICS, SMICS, WCMICS, BSWRICS*) and at other private hospitals across the state. As described previously, unfortunately, as the Albury Wodonga Health- Albury Campus does not submit data in to the VAED, analysis of this activity was unable to be undertaken. Inpatient activity delivered at this service site is therefore not able to be determined and is not included in the analysis. Additionally, due to privacy reasons, where there is less than 5 patients, the exact number can not be listed and instead must be represented as <5. Lung PPM Report Page 20 of 102

21 Unfortunately due to the small numbers, it is not possible to report the reasons for patients travel to metropolitan locations. It does, however, indicate patterns of referral pathways. Further investigation is required to determine how patients can be supported to receive seamless care coordination between metropolitan referral destinations and back to their regional health service sites. Table 4: Patient flow analysis for non-small cell lung cancer Residency of patient Treatment location Central Hume Upper Hume Goulburn Valley Lower Hume LMICS NEMICS Other Private SMICS WCMICS BSWRICS Central Hume Upper Hume 10 0 <5 9 < < < * Please note that this does not include residents of NSW or patients receiving treatment at AWH Albury Note: LMICS = Loddon Mallee Integrated Cancer Service NEMICS = North East Metropolitan Integrated Cancer Service SMICS = South Melbourne Integrated Cancer Service WCMICS = Western and Central Melbourne Integrated Cancer Service BSWRICS = Barwon South Western Regional Integrated Cancer Service Lung PPM Report Page 21 of 102

22 5.3 Supportive care The Victorian supportive care model adopts Fitch s tiered approach to providing supportive care. 7 For the purpose of this discussion, this approach defines the different levels of need within a population group. 8 For the purpose of this project, complexity has been identified by the number of referrals required to meet the supportive care needs of each patient. These data were extracted from a retrospective review of patient medical records. Utilising this definition referral patterns in the Border/East Hume Cancer Network reflect Fitch s Diagram. Figure 2 : Supportive care referrals General needs All patients 74.9% Up to 2 referrals Many patients 19.3% 2-5 referrals Complex needs Some patients Few 5.8% 0% 5-7 referrals >7 referrals Fitch's Diagram Results of Border/East Hume Cancer Network PPM project 7 Achieving best practice cancer care, A guide for implementing multidisciplinary care 2007 Department of Human Services 8 Achieving best practice cancer care, A guide for implementing multidisciplinary care 2007 Department of Human Services Lung PPM Report Page 22 of 102

23 5.4 Multidisciplinary care Profile of Border/East Hume MDTMs There are a number of regular MDTMs held locally in the Border/East Hume Cancer Network, as well as linkages available to metropolitan MDTMs. Table 5 lists these MDTMs and the frequency with which they were held during the 2009/2010 and 2010/2011 financial years. Table 5: MDTMs in the Border/East Hume Cancer Network MDTM Meeting 2009/ / /2012 Gastrointestinal Monday monthly Monday fortnightly Monday fortnightly Urological Thursday 4 weekly Thursday 4 weekly Thursday 4 weekly Breast Wednesday 4 weekly Wednesday 4 weekly Wednesday 4 weekly Mentoring in the Management of Haematological Malignancies (MMHM) -via teleconference with RMH Thursday fortnightly Thursday fortnightly Thursday fortnightly Wangaratta General Tumour Stream 1st Thursday of each month 1st Thursday of each month 1st Thursday of each month Head and Neck clinic Tuesday fortnightly Tuesday fortnightly Tuesday fortnightly Border/East Hume Cancer Network formal linkages to metropolitan MDTMs* Lung (RMH) Friday weekly Friday weekly Friday weekly Lung (Austin) Thursday weekly Thursday weekly Thursday weekly Royal Women s Hospital Oncology and Dysplasia Service Tuesday weekly * Hume RICS does not keep data relating to these MDTMs as they are administered by the metropolitan sites A general multidisciplinary team intake meeting is also held weekly in Albury to present all new medical oncology patients across all tumour streams. Lung PPM Report Page 23 of 102

24 5.4.2 Number of patients presented at the MDTMs Table 6 outlines the number of patients presented at these MDTMs during the same periods. Multidisciplinary team discussion for Border East Hume Cancer Network Lung cancer patients currently occurs through respective tertiary metropolitan treatment centres (RMH and the Austin) and data relating to these meetings is outside the scope of this project. Table 6: Number of patients presented at the Border/East Hume Cancer Network MDTMs MDTM Meeting 2009/ / /2012 Gastrointestinal Urology Breast Wangaratta General Tumour Stream Head and Neck* MMHM (via teleconference with RMH) (46 patients in attendance) Total * Hume RICS commenced administration of the Head and Neck clinic from 20 September 2011 Lung PPM Report Page 24 of 102

25 5.5 Assessment of scope of clinical practice As described previously, the Patient Management Frameworks provide clear guidelines regarding the scope of clinical practice in order to provide quality and safe practice. As described in the PMFs, scope of practice reflects both the expertise and experience of the individual as well as the organisational capability for the provision of safe, high quality cancer services. The guidelines presented in the PMF were used to develop a checklist that was completed for each of the principal health services within the Border/East Hume Cancer Network to determine their ability to provide the recommended level of service and expertise. There are several issues to note when considering the checklists below: Given that radiation oncology is only provided by a private provider in the Border/East Hume Cancer Network, Radiation Oncology Victoria (ROV) has been added to the table regarding radiotherapy treatment as a separate service site Whilst surgeons are not employed by the health services, they conduct surgeries as Visiting Medical Officers at certain sites as identified in the checklists In many cases, the private hospitals do not employ allied health providers, but are able to access services for inpatients as required. However, this may be at an additional cost to the patient. These tables show that the health services in the Border/East Hume Cancer Network responsible for the non surgical treatment of non-small cell lung cancer are comprehensive. Lung PPM Report Page 25 of 102

26 Table 7: Border/East Hume Cancer Network scope of clinical practice checklist Checklist developed from the Patient Management Framework, Lung Tumour Stream: Non-Small Cell Lung Cancer (pp 12 14) LEGEND: AWH = Albury Wodonga Health, Albury & Wodonga Campuses, AWPH = Albury Wodonga Private Hospital, MVPH = Murray Valley Private Hospital, NHW = Northeast Health Wangaratta, WP = Wangaratta Private, ROV = Radiation Oncology Victoria, BMO = Border Medical Oncology Surgery Description AWH AWPH MVPH NHW WP 4A.2 Training and experience of surgeon Surgeon (FRACS or equivalent) with adequate training and experience in thoracic surgery that enables institutional credentialing and agreed scope of practice within this area No No No No No 4A.3 Hospital or treatment unit characteristics- Staff (surgery) Surgeon (with credentials as specified above) No No No No No Full thoracic anaesthetic services No No No No No Respiratory medicine and infectious disease services Yes* No No Yes* No 4A.3 Hospital or treatment unit characteristics Facilities available (surgery) Intensive care unit Yes No No Yes No Appropriate nursing and theatre resources to manage complex thoracic surgery No No No No No In-house access to interventional radiology Yes No No Yes No Access to nutritional support and advice Yes Yes Yes Yes Yes Access to physiotherapy service Yes Yes Yes Yes Yes * Respiratory physician available Lung PPM Report Page 26 of 102

27 Radiotherapy Description AWH AWPH MVPH NHW WP ROV 4B.2 Training and experience of radiation oncologist Radiation oncologists (FRANZCR or equivalent) with adequate training and experience that enables institutional credentialing and agreed scope of practice within this area 4B.3 Hospital or treatment unit characteristics Staff (radiation) Available through ROV Yes Nurses Yes Yes Yes Yes Yes Yes Radiation oncologist (with credentials as specified as above) Available through ROV Yes Radiation oncology medical physicist Available through ROV Yes Radiation therapist Available through ROV Yes 4B.3 Hospital or treatment unit characteristics Facilities available (radiation) Dual modality LINACS Available through ROV Yes CT planning facilities Available through ROV Yes Treatment planning system Available through ROV Yes Ideally, access to PET and electronic transfer of PET data for planning process All PET scans currently conducted at metropolitan locations. PET facility due to open at Albury Wodonga Health in Sept Lung PPM Report Page 27 of 102

28 Drug therapy Description 4C.2 Training and experience of medical oncologist Medical oncologist (FRACP or equivalent) with adequate training and experience that enables institutional credentialing and agreed scope of practice within this area 4C.3 Hospital or treatment unit characteristics Staff (drug therapy) Lung PPM Report Page 28 of 102 AWH (Albury only) Registrar + consultant Med Oncs from BMO AWPH MVPH NHW WP Consultant Med Oncs from BMO Consultant Med Oncs from BMO Consultant Med Oncs from BMO Medical oncologist (with credentials as specified as above) As above As above As above As above As above Nurses with adequate training in chemotherapy administration, handling and disposal of cytotoxic waste Yes Yes Yes Yes n/a* If chemotherapy is prepared on site, then a pharmacist with adequate training in chemotherapy medications, including dosing calculations according to protocols, formulations and/or preparation, is required Some components of less complex therapies may be delivered in a setting where no medical oncologist is locally available, by another medical practitioner with training and experience that enables credentialing and agreed scope of practice within this area. This should be in accordance with a detailed treatment plan or agreed protocol, and with communication as agreed with the medical oncologist or as clinically required 4C.3 Hospital or treatment unit characteristics Facilities available (drug therapy) Not applicable, as no local health services prepare chemotherapy on site Consultant Med Oncs from BMO n/a* Yes Yes Yes Yes n/a* The facility has a clearly defined path to emergency care and advice after hours Yes Yes Yes Yes Yes The facility is able to care for neutropaenic patients Yes Yes Yes Yes Yes There is access to haematology testing Yes Yes Yes Yes Yes Cytotoxic drugs are prepared in a pharmacy with appropriate facilities Occupational health and safety guidelines are followed in relation to handling of cytotoxic drugs, including preparation, waste procedures and spill kits Not applicable, as no local health services prepare chemotherapy on site n/a* Yes Yes Yes Yes Yes Guidelines and protocols, in the case of extravasation of drugs are available and understood Yes n/a** Yes Yes n/a* There is access to a radiology service Yes Yes No*** Yes No*** * Not applicable as chemotherapy is not administered at this health service ** Not applicable as IV chemotherapy is not administered at this health service *** Not located on-site, however services are available from external private providers

29 5.6 Generic successes and gaps in the care pathway across all tumour streams Table 8 presents the successes and gaps that are relevant across all tumour streams with respect to meeting the recommended care pathways described in the PMF. This table highlights issues across the steps of the care pathway from diagnosis to end of life across the four priority areas of multidisciplinary care, care coordination, reducing unwanted variations in care and supportive care. Please note that this table has been repeated across all tumour stream reports and the tumour specific gaps and successes are presented separately. Table 8: Generic successes and gaps in the care pathway across all tumour streams SUCCESSES GAPS The process for referring patients for discussion by the local multidisciplinary team meetings (MDTM) has been shown to be known and understood by the relevant health professionals Initial diagnosis and referral Generally, there is agreement between the relevant health professionals of which investigative tests are needed, and who is responsible for ordering/undertaking them Multiple providers of imaging and pathology services are available, with low waiting times PET scanner at Albury hospital due to be operational by late 2013 On rare occasions referrals from GPs for suspected cancers are directed to an oncologist, whereas it may have been more appropriate for some referrals to be initially directed to a surgeon, depending on the tumour stream With multiple providers of diagnostics and imaging facilities, some clinicians stated that it can be difficult to retrieve previous results leading to duplication of tests for convenience PET scanner currently only available in metropolitan centres, which requires substantial travel for patients and their carers Patients are billed the costs of CT/MRI at Regional Imaging if they are referred there by a GP or specialist. ROV and BMO have a MOU with Regional Imaging that their patients are bulk billed. This may impact on some patients ability to have staging imaging as outpatients There are clear referral pathways and protocols to specialised support services The specific needs of the Adolescent and Young Adult (AYA) cancer patient may not always be considered Patients have continuing access to a key worker Cancer Care Coordinator (CCC), Breast Care Nurse (BCN), and other specialised support nurses who are able to link patients with services, improving access to cancer treatments and supports Patients receive relevant detailed verbal information about their disease, diagnostic procedures, treatment options, There are fewer written resources in languages other than English for patients in low volume tumour streams, Lung PPM Report Page 29 of 102

30 treatment effectiveness, possible adverse effects and outcomes. Written information is offered at all services, with a dedicated Cancer Council NSW Cancer Information and Resource Centre available at Murray Valley Private Hospital and few non written general cancer resources available Determination of treatment There can be varying levels of financial support for patients depending on whether they meet the criteria for Department of Veteran s Affairs (DVA), Home and Community Care (HACC) etc Feedback from several health professionals suggested that there are many people from Aboriginal and Torres Strait Islander communities with cancer who do not access appropriate cancer services at all, or do not access them within a suitable time frame. This often leads to a delay in diagnosis and hence more advanced disease at diagnosis The Border/East Hume Cancer Network has wellestablished local MDTMs for gastrointestinal, head and neck, breast, and urology tumour streams. A haematology MDTM is held via a WebEx link to specialists at the Royal Melbourne Hospital. A general tumour stream MDTM is also held in Wangaratta The MDT have developed protocols that are defined within the Terms of Reference regarding when a patient s care plan will be discussed Not all local surgeons nominate their patients for discussion at MDTMs Not all patients meeting the nomination guidelines in the local MDTM Terms of Reference are presented for discussion at these meetings There has been a 29.7% increase in the number of patients presented at local MDTMs from to Clinicians are also able to link into selected metropolitan MDTMs for lung and gynaecological cancers Local clinicians are not always notified when a patient from the Border/East Hume Cancer Network is being discussed at a metropolitan MDTM and reliability of the links to these meetings (via Webex etc) is variable depending on the facility holding the meeting Supportive care needs are not always routinely discussed at the clinical MDTMs due to time constraints A supportive care meeting is held immediately after the weekly medical oncology intake meeting for staff working in the Albury/Wodonga region GPs are routinely invited to attend local MDTMs (face-toface or teleconference) The supportive care meeting is not currently structured as a formal multidisciplinary meeting and is not administered through CANMAP. Therefore, no formal documentation is developed at this meeting, despite it being a good forum for discussion of the supportive care needs of patients and their families GPs of each individual patient presented at MDTMs are invited to participate but there is no standing GP representative Clinical trial involvement is considered by the Lung PPM Report Page 30 of 102

31 multidisciplinary team for eligible patients who undergo cancer treatment. Representatives from the Border Medical Oncology Research Unit regularly attend local MDTMs A recommended treatment summary is recorded live within the MDTM discussion which includes treatment recommendations and has the capacity to record supportive care recommendations (when discussed). This is forwarded to the lead clinician, central medical record, GP and medical and radiation oncology (as relevant). The recommended treatment summary is able to be accessed 24/7 through the CANMAP database by relevant members of the multidisciplinary team Progression of care is generally well coordinated ensuring the GP and MDT members are clear on their responsibilities. The lead clinician responsible for treatment coordination is clearly documented within the recommended treatment summary for those patients presented at MDTMs Ongoing refinement to CANMAP is required to improve utilisation and acceptability to nominating clinicians and their administrative staff Recommended treatment summaries generated at metropolitan MDTMs are not routinely forwarded to local medical records for patients receiving components of their care in the Border/East Hume Cancer Network Some nursing staff felt there can sometimes be confusion about who is taking responsibility for the ongoing management of patients who are not presented at a MDTM Registrars routinely participate in local MDTMs, and there is a dedicated 1.0FTE MDTM Administrator (0.5FTE funded by NSW and 0.5FTE funded by Victoria) All patients presented at MDTMs provide verbal consent for their case to be discussed Written communication between metropolitan and local health care services (MDTMs, discharge summaries etc) is variable depending on the services involved. Verbal communication may be better but is clinician dependant. GPs may be particularly disadvantaged by these limited formal written communication pathways Health literacy and communication between patients and health professionals has been identified as an issue requiring further attention, specifically as related to patients understanding and managing their own care Treatment Several patients reported that attempts are made at medical and radiation oncology services to coordinate patients and their needs (travel etc) when planning investigations and treatments Some rural patients reported that coordination of investigations/treatments was not always done with consideration to their travelling time etc Theatre availability can be an issue and hospital bed availability is a major issue Patients being treated in the public hospitals (AWH and NHW) are generally able to readily access outpatient and supportive care services There is a financial inequity in accessing services for private patients. Private patients do not have access to the outpatient and supportive care services that public patients can access through public hospital systems. Cost may be a barrier to such patients accessing private services such as private dietetics, physiotherapy etc Lung PPM Report Page 31 of 102

32 Prior to the early 2000 s, there were no local medical oncologists or radiation oncologists and only a visiting service was available to local patients. Border Medical Oncology now has four medical oncologists and Murray Valley Radiation Oncology Centre has two radiation oncologists The Border/East Hume Cancer Network only has private radiation oncology and medical oncology services and the cost of local care can be prohibitive for some patients An outreach chemotherapy programme is currently being developed in partnership with the Royal Children s Hospital to deliver chemotherapy to paediatric patients in Albury Outreach chemotherapy protocols have been developed to allow a small number of non-complex chemotherapy treatments to be delivered in Deniliquin one day a week Some day chemotherapy unit staff indicated they would like the communication systems to be improved to support the delivery of more timely information prior to a patient s first chemotherapy treatment In addition to the two day oncology units in the regional hub of Albury/Wodonga, a day oncology unit is available at Northeast Health Wangaratta five days a week with highly skilled staff, for the delivery of less complex outpatient chemotherapy Rural health services indicated their desire to be more involved in the supportive care management of oncology patients living in their areas Some patients reported not understanding why they weren t given the option to undertake their chemotherapy treatment closer to home in Wangaratta, instead of Albury/Wodonga which required additional travel Some patients reported having to travel to Albury/Wodonga for treatment that perhaps could have been delivered from rural health services. i.e.; PICC line and side effect management, etc All new patients are counselled on their first appointment prior to oncology treatment (medical and radiation) on what to expect, referred to cancer care coordinators, specialist nurses - there is a separate room for privacy for this counselling to be undertaken The Fight Cancer Foundation opened the Hilltop Patient and Carers Accommodation Centre in 2013, which is colocated with the Albury Campus of Albury Wodonga Health. Patient/carer accommodation is also available at Willow Park Lodge located at Murray Valley Private Hospital, in addition to a number of other local independent accommodation providers Many rural consumers raised transport as a limiting factor in regards to accessing treatment sites in the regional centre of Albury/Wodonga particularly for frequent treatment regimes. Cost of private transport and availability of community/public transport were named as major concerns Many rural consumers commented that the eligibility criteria for the Victorian Patient Transport Assistance Scheme (VPTAS) were very limiting. The criteria currently require patients to travel 100 kilometres or more one way, or to travel (on average) 500 kilometres per week for five or more weeks in a row to be eligible to receive a subsidy. Many patients from the Alpine area do not meet these criteria as they live just within a 100km radius of Albury Wodonga Lung PPM Report Page 32 of 102

33 Some clinicians commented that the private sector was crucial in the provision of services that were previously absent or severely limited in the region. Clinicians felt that the shared care provided by the public and private sector was very beneficial to helping achieve optimal patient care. The vast majority of clinicians indicated that they had good relationships with their peers and that appropriate crossreferrals are made according to local expertise Some patients on low incomes reported that due to their inability to meet the cost of consultations with private specialist practices that they opted to have treatment at a public treatment facility in Melbourne, incurring additional costs for travel and accommodation and high levels of stress. Some patients reported difficulty negotiating bulk-billing or payment plan options with local private services as they found it embarrassing and humiliating A successful bid was submitted for funding to build the Albury Wodonga Regional Cancer Centre to house all cancer treatment services and a dedicated wellness centre, due to open in late 2015 There is a dedicated Oncology Nurse Practitioner (ONP) position employed by Albury Wodonga Health. The ONP routinely attends the Gastrointestinal, Breast, Urology, Head and Neck and Haematology MDTMs, and the supportive care meeting in Albury Wodonga There can be difficulty accessing ongoing, specific oncology training for specialist health care staff (nursing, allied health) Services in the Border/East Hume Cancer Network are comprehensive enough to offer most patients a high standard of care plus continuity and consistency with clinicians that may not be available in larger metropolitan areas In NSW and Victoria, there are different arrangements in place for the provision of chemotherapy drugs which can affect the out of pocket expenses incurred by patients for their chemotherapy medications Patients attending the private chemotherapy unit at Murray Valley Private Hospital (MVPH) do not usually incur a cost for intravenous medications, as the out of pocket expense is often paid for by the private health insurance fund. Private patients may incur an out of pocket expense for medications they receive on discharge Patients attending the chemotherapy unit at Northeast Health Wangaratta do not incur an out of pocket expense for their chemotherapy, as any excess charge is absorbed by the hospital Some patients raised the issue of cost of chemotherapy in the day oncology unit at Albury. Patients are required to pay an out of pocket expense for medication (pretreatment medication, chemotherapy and supportive medications for side effects). The out of pocket expense is often significantly reduced when the patient reaches their annual PBS threshold, however they may still be subject to an out of pocket expense if the medication they are receiving is not covered by the PBS. One patient reported paying to have medication sent from a Victorian metropolitan hospital pharmacy as they were unable to afford to have prescriptions filled by the local NSW-based community pharmacy. Another patient reported not taking supportive medications as they could not afford them As with other sites, patients at Northeast Health Wangaratta often incur an out of pocket expense for their supportive medications to assist with the management of side effects (anti-nausea medication) and discharge medication. As described above, the out Lung PPM Report Page 33 of 102

34 of pocket expense is often significantly reduced when the patient reaches their annual PBS threshold Public patients do not incur an out of pocket expense for their attendance at the day chemotherapy unit at Albury Wodonga Health or Northeast Health Wangaratta Formal supportive care screening with a validated screening tool is now routinely offered to all patients at their first visit to BMO, ROV, and chemotherapy units. This is designed to facilitate early referrals to support services Processes have been developed to ensure that a copy of the supportive care screening tool is distributed to the relevant members of the treatment team, as well as to the relevant central medical record Depending on the coverage provided by the patient s private health insurance fund, some patients receiving treatment at the MVPH day chemotherapy unit may incur an out of pocket expense for each visit Formal supportive care screening is not routinely undertaken for patients receiving surgery alone There are several public and private health services in the Border/East Hume Cancer Network and it is not always easy to identify which health services each patient will attend for components of their treatment and hence where to send a copy of the supportive care screening tool Patients and carers often reported a reluctance to initiate contact with support services, but reported that they benefited greatly when a CCC contacted them directly to offer support Access to CHARM for all clinical staff has been incorporated into Albury Wodonga Regional Cancer Centre planning The vast majority of patients requiring radiotherapy are able to undertake their radiation treatment at ROV in Wodonga. However, if a highly specialised treatment is required, referral pathways are in place to refer patients to an appropriate metropolitan service with a radiation oncologist who specialises in that particular treatment/tumour stream CHARM is currently available at AWH (Albury) and MVPH (although the full functionality is not utilised), but not available at Northeast Health Wangaratta. This was reported to limit communication between medical oncologists and the day oncology unit, with a current reliance on faxed correspondence. As the faxed medication charts are then transcribed at NHW, this can be associated with a risk of human error ROV reported that radiation treatment can be delayed beyond the recommended timeframes set out in the PMFs due to poor post-surgical discharge processes from some Melbourne health services, relying on the local health service or the patient to arrange for radiation treatment, and not taking into account the time lapse before treatment can commence (eg. planning time) There is no system in place to routinely link to local support services for patients who have the majority of their treatment in metropolitan centres Early referrals to palliative care are encouraged through regular supportive care meetings It was felt by palliative care staff that some health professionals are unaware of the multiple roles that palliative care can have throughout the cancer trajectory, not just for end of life care. The palliative care team can contribute to the ongoing management of symptom control There is no local medical model for the Hume region Lung PPM Report Page 34 of 102

35 Follow up care with regards to palliative care. The potential appointment of a palliative care physician is being considered, but the region is currently reliant on metropolitan services visiting once a month Feedback from health professionals identified a need for culturally appropriate education for Aboriginal Health Workers and community members regarding cancer prevention and treatment A supportive care meeting is held weekly in Albury/Wodonga to identify the needs of the patient/family. There is representation across nursing and allied health to address the needs of patients and their families/carers and referrals are made to health professionals in Wangaratta and rural services as required allowing for better coordination of care There are good communication links between CCC s, palliative care and the oncology team resulting in a large proportion of cross referrals There is difficulty accessing psycho-oncology services (especially psychologists/psychiatrists) in the public sector. There is a 0.6FTE Oncology Social Worker at Albury Wodonga Health and a clinical psychologist with oncology experience at Northeast Health Wangaratta, but outpatients from rural areas may find it difficult to access services. The cost of private psychology services may be prohibitive for some patients The lead clinician (GP, specialist etc) is not always clearly identified post treatment and this can lead to patient confusion and inconsistent access to support services GP representatives reported that some GPs felt they are not well informed about patients previous treatment or medications when patients return for post- treatment management Specific local community supports for people with a cancer diagnosis include breast cancer support groups, Look Good Feel Better, Brave Hearts, Dragons Abreast, Mayflies, a Gynaecology and Ovarian (GO) support group, a Prostate Cancer Support Group and the Albury Wodonga Cancer Foundation. There is also a Wellness Circle for women with cancer Cancer patients have continuing access to a key worker in the form of a Cancer Care Coordinator (CCC),Breast Care Nurse (BCN), or Leukaemia Foundation Support Coordinator The Border/East Hume Cancer Network has several highly skilled lymphoedema practitioners in public and private settings Local tumour specific community support groups are limited to breast, prostate and ovarian cancers. Other tumour streams rely on web or phone based support Health professionals and patients both reported occasions where transfer of care was poorly coordinated due to limited communication on discharge from some metropolitan health services. Patients reported feeling unsupported or unsure of what services they needed and GPs reported they were not informed of relevant treatment information Local publically funded lymphoedema services currently have a significant waiting time and access continues to be raised as an issue Referral to community nursing is very simple for NSW patients but follows a much more complex system for VIC patients due to the structure, pathway, and funding bodies. This is one example of the cross-border Lung PPM Report Page 35 of 102

36 differences in referral pathways and eligibility criteria for a range of support services including allied health, community and district nursing and HACC services Determination of plans and treatment for recurrence Patients often reported that Centrelink Forms are confusing and difficult to manage particularly for patients with low literacy levels. Access to Centrelink can be difficult for patients living away from major centres Patients discharged from private hospitals can have difficulty accessing publically funded support services at home It is unknown what supports are needed or available for children and spouses of people with cancer in the region Treatment care planning for recurrence is often undertaken by the MDT Clear plans for follow up exist within local surgical and oncological teams GPs reported that they are sometimes not involved in the coordination of follow up When asked about follow up care plans, many patients agreed that written information would have been of more benefit than verbal information alone End of life care There is difficulty accessing counselling, sexual health, psycho-oncology, and family planning services in the region GPs commented that they would like to be better aware of the service providers involved with their patients so as to improve coordination of supportive care services and not double up on referrals Mercy Health Albury has 10 inpatient hospice beds There are some restrictions on access to palliative care services across the NSW/Victorian border which can be time consuming and frustrating for the patient/family/carers. No dedicated hospice facility within the Hume region (on the Victorian side of the border). There are allocated beds across the region within clinical hospitals for the management of end of life care Relevant services have been identified across the acute, sub acute and community sector both locally and cross border. Services are more readily available in the larger sites with outreach services accommodating the needs of patients living in rural areas. Feedback from clinician and patient interviews acknowledges their utilisation Palliative Care staff in metropolitan centres often refer patients back to local palliative care services on discharge Lung PPM Report Page 36 of 102

37 from a tertiary hospital Palliative care staff reported feeling that many health professionals are unaware of the multiple roles that the palliative care team can have throughout the cancer trajectory It was noted that throughout the region there is no clear known pathway to access to pastoral care services - this is particularly pertinent with end of life care. There is a lack of access to services to assist with spiritual needs regardless of religious denomination currently there can occasionally be generalist and spiritual support this may not always be the patients preference Lung PPM Report Page 37 of 102

38 5.7 Specific successes and gaps in the care pathway for lung cancer Table 9 presents the successes and gaps particular to non-small cell lung cancer that were identified in this project with respect to meeting the recommended care pathway described in the PMF. This table highlights issues across the steps of the care pathway from diagnosis to end of life across the four priority areas of multidisciplinary care, care coordination, reducing unwanted variations in care and supportive care. Table 9: Specific successes and gaps in meeting the PMF for lung cancer care SUCCESSES GAPS A metropolitan thoracic surgeon conducts outreach clinic consultations in Albury/Wodonga each fortnight Referrals from GPs to the local respiratory physician are generally improving with respect to timeliness of referral GPs reported a greater awareness of lung cancer signs and symptoms Initial diagnosis and referral The numbers of lung cancer patients nominated for discussion at metropolitan MDTMs is not collected Both health professionals and lung cancer patients stated that there are sometimes issues with the time it takes from investigative work ups to commencement of treatment. Some consumer comments included: Takes forever, We felt agitated, depressed and angry and It would have been easier to die. Some lung cancer patients stated they were not given any written information prior to treatment Strong linkages with specialist metropolitan cardiothoracic surgery teams Some lung cancer patients stated they were not given a choice of where their treatment would occur Some patients responded that they were not given information regarding local supports at discharge from hospital or following initial consultation but felt it was needed There are strong linkages between support nurses at Royal Melbourne Hospital and St Vincent s Hospital to the local CCC, however these linkages are personspecific and not systematic Further work is required to develop and sustain systematic linkages and referral pathways between metropolitan treatment centres and local services, including CCCs Strong clinical linkages and referral pathways are in place to the Austin Hospital, Royal Melbourne Hospital and St Vincent s Hospital for lung cancer patients Determination of treatment Lung PPM Report Page 38 of 102

39 Linkages are available to both Austin and RMH Lung MDTM for local oncologists and respiratory physician Some clinicians have stated that there should be consideration of the establishment of a local lung MDTM Physicians are available to work as part of a shared care model with the patient's general practitioner Some patients interviewed felt they had no input into their treatment decisions, but also noted: didn t care, as long as I got answers, no, but not unhappy with decisions and just went along with it Post surgery patients are often referred to the local respiratory physician and follow up is undertaken in a shared care model between the specialist and GP Treatment One clinician noted there is limited involvement of the respiratory physician with in-operable or metastatic patients who are having radiotherapy or chemotherapy There is no access to thoracic surgery within the region Access to endo-bronchial ultrasound continues to be an issue. Lung cancer patients are often referred to the Royal Melbourne Hospital for this specialist radiological intervention and there may be delays in accessing this service Brachytherapy not available locally for lung cancer One local health service is using very old fibre bronchoscopes and it was suggested that more videobronchoscopes are required Follow up care Surgical patients are not often given a written plan for follow up, but are routinely contacted by RMH and St Vincent s by phone for follow up Concern from some health professionals that given there is no written care plan, the patient is reliant on phone calls from a metropolitan treatment centre for follow up. On occasion, these patients have been missed due to the referral letter not being sent from the metropolitan hospital to the local oncologist/physician. There is also some concern from health professionals that given there is no written care plan, the patient is often left feeling like they don t know what is going on feel isolated and unsupported Good local links from oncologists and utilisation of local cancer care coordinator One particular metropolitan health service is very aware of assisting regional patients with supportive care needs or issues Lung PPM Report Page 39 of 102

40 Patients have continuing access to a key contact with a local cancer care coordinator Determination of plans and treatment for recurrence There are no specific successes or gaps for this tumour stream End of life care There are no specific successes or gaps for this tumour stream. Lung PPM Report Page 40 of 102

41 6. RECOMMENDATIONS Recommendations for addressing the gaps that were identified in this project were developed and presented under the four priority areas of multidisciplinary care, care coordination, supportive care and reducing variations in care, and have been categorised as short or long-term according to their ease of implementation. It is the role of Hume RICS to work in partnership with the relevant health services, clinicians, other health professionals and consumers to develop and/or support strategies to address these recommendations in order to improve cancer service delivery. 6.1 Multidisciplinary Care Table 10: Recommendations for multidisciplinary care Number Recommendation Short-term Long-term 1 The feasibility of establishing a local lung cancer MDTM is further explored, including the potential to remotely link in a cardiothoracic surgeon from a tertiary hospital 2 Hume RICS continues to contribute to local and statewide initiatives to improve multidisciplinary team meeting administration, including to support the implementation of sustainable, standardised software and to contribute to statewide minimum datasets Lung PPM Report Page 41 of 102

42 6.2 Care coordination Table 11: Recommendations for care coordination Number Recommendation Short-term Long-term 1 Collaborate with metropolitan health services to identify opportunities to improve referral processes and pathways for Hume patients requiring endo-bronchial ultrasound 2 Health professionals and consumers should be well informed about the range of different treatment and supportive care options, particularly those available close to the patient s home 3 Hume RICS continues to promote engagement with the community health sector, and Home and Community Care (HACC) services, particularly in relation to linking rural and remote patients with their local support services where possible 4 Relevant federal and statewide strategies working towards improving communication channels between all health professionals, including GPs, should be promoted widely (such as the Human Services Directory (HSD) and e-referral 5 Communication systems are improved to ensure that patient medical information is available in a timely manner to all relevant clinicians, including the GP 6 Transition of care (discharge planning) processes should be improved to promote continuity of care, particularly between metropolitan and regional/rural health services, private hospitals and primary health services, and also between specialist cancer services, primary health and palliative care 7 The potential barriers in accessing appropriate services should be identified and strategies developed to address them 8 Protocols are developed and implemented to ensure that patients being transferred from a metropolitan treatment centre back to the Border/East Hume Cancer Network are referred to the relevant local support nurse/cancer Care Coordinator in a timely manner 9 Processes are established to promote the development of cancer care management plans and palliative care pathways (as guided by the Goulburn Valley Health End of Life project) 10 Review of lymphoedema models of care, including early intervention, are supported 11 Resources are developed for GPs that support appropriate and timely referral of people diagnosed with cancer to specialist cancer services and community services as appropriate Lung PPM Report Page 42 of 102

43 6.3 Supportive care Table 12: Recommendations for supportive care Number Recommendation Short-term Long-term 1 Health services are supported to ensure that all newly diagnosed cancer patients have access to supportive care screening (including the utilisation of a screening tool developed specifically for patients aged over 70 years) and that these results are documented in the patient s central medical record 2 Supportive care screening is implemented at designated follow up intervals, including recurrence 3 The importance of supportive care discussion within a multidisciplinary team meeting is promoted and that this discussion is documented 4 Health services are supported to develop service models which include prevention, early intervention, treatment and support for cancer patients. Such services may include lymphoedema services, speech therapy, dietetics, counselling, PEG feeding and home oxygen 5 Hume RICS continues to provide and promote practical support and information for consumers (including the Hume RICS website, tailored standardised information packs and professional development sessions for specialist cancer staff) and continues to focus on improving information and access to travel, accommodation and financial supports 6 Options for access to pastoral care should be investigated and promoted 7 Partnerships with palliative care services are enhanced and a health promotion approach to palliative care is supported, including advocating for the importance of early intervention 8 Transport, financial, and emotional support continue to be raised as issues for rural communities in accessing oncology treatment 9 Continue to raise awareness of the specific supportive care needs of priority population groups including Aboriginal and Torres Strait Islander, adolescent and young adults, and culturally and linguistically diverse communities 10 A model is developed to facilitate increased access to psychosocial oncology support for public and private patients in community and inpatient settings across both sides of the NSW/Victorian border 11 All patients who are transferred to a regional medical facility from a metropolitan one should be referred to a CCC to ensure family centred supportive care is maintained Lung PPM Report Page 43 of 102

44 6.4 Reducing Unwanted Variations in Care Table 13: Recommendations for reducing unwanted variations in care Number Recommendation Short-term Long-term 1 Medical oncology education for small rural health services and GPs should be facilitated, including pain and side effect management for cancer patients 2 Systems for timely access to allied health services and practical supports are developed, particularly for patients in private hospitals 3 In consultation with the Hume Medicare Local, Hume RICS provides GPs with access to oncology/specialist referral criteria and pathways, as informed by the findings of the West Hume Cancer Network GP project 4 Waiting times around access to theatres should be investigated to better understand the implications and impacts 5 Earlier referral processes from metropolitan settings to rural radiation services are in order to avoid delays experienced by patients in accessing local radiotherapy services 6 Support the work undertaken by the Albury Wodonga Regional Cancer Centre Consortium to advocate for improved access to public medical oncology and radiotherapy 7 Further investigate the inequities in financial supports (including subsidies for dietary supplements, HACC services, community/district nursing) to identify the differences for public/private patients and NSW/Victorian residents 8 An education needs analysis should be conducted in order to develop and facilitate appropriate professional development for a broad range of health professionals involved in the care of patients with cancer; particularly as related to issues such as death and dying, treatmentrelated sexual issues, health literacy and self care 9 Support health services in exploring opportunities to implement and/or further extend their use of CHARM to improve systems relating to safety, quality and efficiency Lung PPM Report Page 44 of 102

45 7. DISCUSSION The aim of this project was to identify opportunities for whole system improvement and development, for consistent and coordinated cancer care across the Hume Region. In accordance with the objectives, this project identified the successes and gaps with respect to how well the actual patient pathway aligned with the optimal patient pathway described by the PMF. Based on the findings of this project, key recommendations were identified and classified as short-term or long-term priorities for Hume RICS to incorporate in future cancer service improvement activities as directed by the Hume RICS Strategic Plan. This project was able to collect broad data from a variety of sources, including interviews with clinicians, health professionals and consumers, as well as from several local and statewide data sources. However, several limitations of this project were identified, including the difficulty in obtaining an accurate and thorough understanding of the patients journey from assessing medical records alone. This was particularly noticeable in Albury/Wodonga where patients may receive treatment from a mix of public and private services on either side of the border. This meant that a review of the medical record where the patient received the bulk of their treatment may not accurately document the entire patient journey. Improving the transfer of documentation between service sites is a priority area for service improvement. It was also not possible within the scope of this project to review the medical records of patients receiving components of their care at metropolitan sites. Future projects could investigate opportunities for review of both regional and metropolitan health service sites to gain a thorough understanding of all treatment and support provided. Due to the limitations of the consumer recruitment strategy, it was sometimes difficult to recruit consumers with a relatively recent diagnosis of some of the lower volume cancers. Future patient pathway mapping projects could investigate recruiting consumers prospectively to document the entire patient journey from diagnosis onwards. Whilst there was positive engagement from the health professional community to participate, it was sometimes difficult to obtain information about all the tumour types examined in this project. For example, the majority of specialists in the Border/East Hume Cancer Network treat multiple tumour types and did not have time to discuss the tumour-specific successes and gaps at length during their interviews with the project team. However, it is acknowledged that many of the areas identified for improvement are general across all tumour types (eg. improving communication processes etc). A major limitation with respect to analysing data in the Border/East Hume Cancer Network was the absence of Albury data in the VAED. This has been identified as a priority area for resolution as currently the data available severely under-reports cancer service activity across the Border/East Hume Cancer Network. It also limits the ability to determine patient flows both within and external to the Hume region. It was also sometimes difficult to compare incidence and mortality data collected by the NSW Cancer Registry and Cancer Council Victoria due to differing definitions and data fields collected. In summary, this project has identified the gaps and successes with respect to the actual patient pathway in the Border/East Hume Cancer Network as compared to the optimal patient pathway described by the PMF. The findings of this project have enabled key recommendations to be developed and these should form the basis of future cancer service improvement activities for Hume RICS, in partnership with health services across the network. Lung PPM Report Page 45 of 102

46 8. ACKNOWLEDGMENTS The following Border/East Hume RICS current and former staff members are acknowledged for their contributions to this project: Paula Fraser, Rebecca Myers, Kathy Vickers, Clare Dunin, Nick Brown, Robyn Sharman, Liz Macpherson, Jenny O Connor, Jenny Donnelly, Vanessa Sariman, Marg McKenzie, Alex McKenna and Theresa Richards. This project was conducted in partnership with the West Hume RICS team, and along with the staff of the Directorate of Hume RICS, they are acknowledged for their contributions: Carole Mott, Christine Ryan, Allison Hartney, Gemma Kenny, Rebecca McAllister, Megan Wright, Monica Harvey, Renee Scott and Clare McCarthy. The participation of the many consumers, clinicians, health professionals and staff members of our partner health services in this project was pivotal and all participants are acknowledged and thanked for their significant input to this project. The Hume RICS Strategic Manager, Chris Packer, and Border/East Hume Clinical Director, Dr Craig Underhill are acknowledged for providing strategic management to this project. The Border/East Hume Clinical Reference Group and Cancer Network Committee provided overall guidance regarding the objectives and scope of this project, as well as prioritising the recommendations for cancer service improvement activity arising from this project. The Hume RICS Executive are acknowledged for their support of this project across the Hume region. Lung PPM Report Page 46 of 102

47 9. REFERENCES 1,9 Clinical Networks: A framework for Victoria 2008 Department of Human Services 2,16,23,24 Patient management frameworks 2006 Department of Human Services 3 Patient management framework Lung tumour stream: non-small cell lung cancer 2006 Department of Human Services 4 National Survey of NHS Patients Questionnaire ( ), Centre for Social Research, Picker Institute Europe 5 Victorian Cancer Patient Experience Survey Tool 2011, Victorian Department of Health 6,31,32 Data obtained from Cancer Council Victoria and NSW Cancer Registry 7,8,12,18 Achieving best practice cancer care, A guide for implementing multidisciplinary care 2007 Department of Human Services 10,14,15 A Cancer Services Framework for Victoria 2003 Department of Human Services 11 Victoria s Cancer Action Plan , 2008 Department of Human Services 13,25 Clinical excellence in cancer care, a model for safety and quality in Victorian cancer services 2007 Department of Human Services Multidisciplinary Care Literature review June 2012 Department of Health 20 Multidisciplinary Team Meeting Toolkit 2006 Department of Human Services 21 Multidisciplinary team meetings in Victoria, Monitoring progress towards achieving best practice cancer care Department of Health 22 Linking cancer care: A guide for implementing coordinated cancer care 2007 Department of Human Services 26 PCP and ML regional and southern NSW boundaries 2011, Extract from 27 Service and Workforce Planning, Portfolio Services and Strategic Projects Division Feb 2009 Department of Human Services 28 Victoria in Future 2012: Population and household projections for Victoria and its regions , Department of Planning and Community Development 29 NSW Statistical Local Area Population Projections , NSW Department of Planning 30 Data obtained from Victorian Department of Health and NSW Cancer Registry 33,35 Data obtained from Cancer Council Victoria 34,36 Data obtained from NSW Cancer Registry Lung PPM Report Page 47 of 102

48 10. APPENDICES Appendix 1: Patient Management Frameworks toolkit Patient Management Frameworks Tools to assist in working with local tumour groups The Patient Management Frameworks are a guide to the optimal care management of patients in each tumour stream. They are intended to improve patient outcomes by facilitating consistent care based on evidence and best practice across the state. They can be used in a variety to ways: Provide a uniform approach across the State and a common language for discussion about what is required for optimal care for cancer patients Can focus discussion on steps of the patient journey to identify where improvements can be made Provide a benchmark to identify what needs to happen to improve care Assist in identifying the priority areas that need to improve Compare practice across an Integrated Cancer Service. The tools in this package are designed to assist in these activities. You may wish to use them as they are or to modify them to meet you specific needs. Lung PPM Report Page 48 of 102

49 Patient Management Frameworks A Guide to their use Outlined below is a guide and some examples of what the Integrated Cancer Services may wish to consider when implementing the PMF s. More specifically, the types of questions the Local Collaborating Tumour Groups (LCTG s) may wish to ask about the services/care they provide. The guide uses the priority outcomes for the Integrated Cancer Services as a reference point, with the aim of maximising integration of the information. This is not an exhaustive checklist but rather a starting point when implementing the PMF s in your LCTG s within your Integrated Cancer Service. Steps of the patient pathway Multidisciplinary Care Care Coordination Psychosocial and Supportive care Variations in Care At Community Level Is accurate, understandable information available and accessible to the general community about the signs and symptoms (S&S) that need to be reported to a GP, which may be suggestive of this tumour type? Are GPs aware of the S&S suggestive of this type of tumour, as well as patients that are at higher risk of the tumour due to family/personal history? Are there clear screening processes in the community regarding the patients risk of anxiety and depression? Are you clear within your tumour group what the community capacity is, to contribute to supportive care and who to refer to? Is there an awareness of where screening is accessible to patients within your tumour group? Is there data to review these processes? Initial diagnosis and referral Is the process for referring patients for discussion by the MDT known and understood by the relevant healthcare professionals? Are members of the MDT clear about where the particular care can be provided within their tumour group? Is there agreement between different HPs (GPs, surgeons, oncologists) of what investigative tests are needed, and who is responsible for ordering/undertaking them for this tumour group? Are there clear referral pathways between service providers within your tumour group? Are there written protocols as appropriate to ensure clear understanding of processes and roles? What is in place to support the processes required? (eg common referral templates inclusive of all information required) Is there clear understanding of information that the consumer needs at this stage? Do all patients receive relevant information about their disease, diagnostic procedures, treatment options, treatment effectiveness, possible adverse effects, and outcomes? Are there clear referral pathways and protocols to specialised supportive services within your tumour group? Are there clear referral processes in place to ensure the patient receives the necessary assessment by the appropriate practitioner? Multidisciplinary Care Care Coordination Psychosocial and Supportive care Variations in Care Determination of treatment Is there a MDT discussion/meeting that Is consent of the patient sought prior to Is there an identified person to Are there agreed protocols and pathways Lung PPM Report Page 49 of 102

50 Treatment Follow-up Care Determination of plans and treatment for recurrence End of Life Care takes place to prospectively plan the patients care? Are patients given full information on advantages and risks and different options recommended by the MDT for treatment, with sufficient detail to allow them to play an active part in decision making? Has the MDT developed protocols on when the patients care plan will be discussed? Does the MDT record include treatment and care recommendations? Does each patient have a written plan for his or her treatment or follow-up, which addresses the relevant issues for that particular tumour group? Is treatment care planning for recurrence undertaken by a MDT including the patients GP? Are there relevant MDT members and services in place that can assist the patient in dealing with end of life/care issues? multidisciplinary discussion? Has case conferencing and/or a MDT meeting been conducted as appropriate to ensure the care plan is coordinated and then relayed to the patient? Progression of care should be coordinated ensuring the patient, GP and MDT members are clear on their responsibilities within the tumour group. Are there mechanisms in place to ensure this has been documented in the patient record? Are there mechanisms in place to ensure continuity of care? (eg protocols/systems of communication between service providers public/private, acute/gp to ensure relevant staff are informed of each stage of the patients progress). Does the patient have a care plan and understand the planned treatment and processes/sequence? Is there access to a discharge summary template and are the relevant team members aware of the referral mechanisms within your tumour group? Is patient decision-making considered when planning coordinated care/treatment for patients in this tumour group? Is the care that is coordinated considerate to the needs and wishes of the patient and family? Are there clear communication channels between the patient/families and care providers? communicate the treatment and care plan to the patient? Is there adequate staff training within your tumour group in identifying and responding to supportive care needs? Do you ensure that patients/carers/families are provided with information in a variety of formats to meet their needs? (eg written or verbal; taped/written record of consultations; facilitate the use of an interpreter if necessary). Are patients informed about sources of social and practical help, such as support groups and helplines? Do patients have continuing access to a key contact from the MDT? Is there provision for patients to give feedback on their experience of treatment, facilities and services they receive? Is the appropriate MDT in place to assist his or her family through physical, psychological, emotional and spiritual needs? For many patients and families this may include bereavement support for determining patient treatment within your tumour group? Is there an agreed process of involving patients in decisions about their treatment? Is your workforce competent? How do you know? What data do you collect to measure this? Is there timely re-assessment by appropriate team members? Are there clear communication strategies in place between team members regarding follow-up care? Are there protocols in place to clearly establish the plans and treatment for recurrence in this tumour group? Are there appropriate end of life services available to patients? Are there agreed referral processes between cancer and palliative care services? Lung PPM Report Page 50 of 102

51 Patient Management Frameworks worksheet TUMOUR GROUP: From the patient management framework, identify issues, gaps and inconsistencies, and then agree on priority initiatives. KEY ASPECTS TO ADDRESS Multidisciplinary Care At Community Level Initial diagnosis and referral Determination of treatment Treatment Follow-up care Determination of plans and treatment for recurrence End-of-life care Care Coordination Psychosocial and Supportive Care Reducing Variations in Care Agreed priority initiative/s Lung PPM Report Page 51 of 102

52 Identifying gaps in care coordination Using the questions below, complete the columns in the table below: 1. Patient Perspective Thinking from the patient perspective what information provision/ support needs to happen at this point at the interface between the health professional and the patient to ensure continuity of care? 2. Health Professional perspective In the role of a health professional, what information do you need to get at this stage and what do you need to pass on to others How and to whom? 3. Processes needed What needs to happen behind the scene to ensure continuity between this stage and the next? Lung PPM Report Page 52 of 102

53 Critical Point Patient perspective Health Professional Perspective Processes Initial diagnosis and referral Determination of treatment Treatment Critical Point Patient perspective Health Professional Perspective Processes Follow up care Determination of plan and treatment for recurrence End of life care Lung PPM Report Page 53 of 102

54 IMPACT Decision Making Grid EFFORT Difficult to do Easy to do Major improvement Build a realistic strategy to get there DO IT Minor improvement Park it DO IT Evaluate your strategies or initiatives to determine which ones you are going to pursue Lung PPM Report Page 54 of 102

55 Appendix 2: Supplementary Health Professional Interview Questions Please have a look at the Patient Management Framework (Patient Pathway) as set out by the Victorian Department of Health. Please consider the following questions (where applicable). 1. Could you please advise whether you think this is an accurate representation of what occurs for the majority of your patients? (Is this the usual path that they take?). 2. Are there any areas listed that you find are difficult to access and why? 3. At a point for referral along the patient pathway, i.e. initial diagnosis (General Practitioner), where do the majority of your patient referrals come from? 4. What progression of disease do the majority of patients have when they attend for their first appointment with you? I.e. post diagnostic work (breast examination/mammogram/biopsy). 5. What level of support do you believe you have in your service delivery? (Do you believe that you are well support professionally i.e. have access to services than enable you to care for your patients along the patient pathway)? 6. In your current professional position, do you believe that are any gaps or duplications in providing optimal patient care? What are these are do you know why they have occurred? I.e. preliminary workup by the patients General Practitioner before being referred to specialist. 7. In what form to you complete referrals, as required, to other health professionals or supportive care organizations (i.e. letters, phone calls, s etc). 8. What are your views on care coordination? Do you believe it is done well or not? 9. Do you believe there are any areas that are of concern to you regarding the patients treatment pathway? I.e. do you believe you have timely access to investigation and treatment modalities? Are there any areas of diagnostic treatment or testing that is impacting on the patient treatment? 10. Are all the patients that you see that have a diagnosis of cancer discussed at a MDT meeting? Do you discuss with your patient s multidisciplinary care and the role of multidisciplinary teams meetings? At what stage are your patients presented at a MDT meeting, i.e. pre or post surgical intervention? Lung PPM Report Page 55 of 102

56 11. Do you have your own database or do you utilize a central database to house patient information? Is this information shared with Health Information Management (patient medical records) at all treating hospitals/health services? 12. In general, what information do you give to your patients regarding their diagnosis, and at what point after investigations/diagnosis do you give patient s information? 13.Do you see private, public or a combination of both types of patients? Generally, what percentage would you see for each? 14. What do you do if it is a complicated or rare tumor? Do you send tumor markers off to other sites nationally or internationally? 15.Do you offer and give access to all eligible patients for clinical trials? How is this determined? Do you receive regular information about clinical trials that people are able to access? 16.Which hospitals in the metropolitan region so you have links to and refer to? Why? Lung PPM Report Page 56 of 102

57 Appendix 3: Consumer Participant Questionnaire Participant Questionnaire - Patient Pathways Mapping Hume Regional Integrated Cancer Service is undertaking a service improvement project entitled Patient Pathway Mapping. Your participation in this project will enable Hume RICS to identify areas for improvement in patient access to cancer care services. This questionnaire is based on The National Survey of NHS Patients Questionnaire ( ) from the Centre for Social Research, Picker Institute Europe and the Victorian Department of Health s Victorian Cancer Patient Experience Survey Tool. The questionnaire is structured into four parts: 1. About You 2. Finding out what was wrong with you 3. Treatment: Planning and Management, including Surgery 4. Treatment Journey, including Radiotherapy and Chemotherapy The structure of the questionnaire means that a great deal of quantitative data will be obtained. There are, where possible, areas in the questionnaire where participants can make comments and share their opinion regarding how cancer services could be improved. Lung PPM Report Page 57 of 102

58 Part 1: About You. This section asks for some background information about you and your cancer treatment. These questions help us get an idea of who is participating in the study. 1. Are you male or female? Male Female 2. What age bracket do you belong to? years years years years years Over 70 years 3. What is your ethnic background? Aboriginal Torres Strait Australian Other Describe: 4. What part of the Healthcare Sector do you belong to? Public Private DVA 5. What is your postcode? 6. What is your primary cancer diagnosis? Lung PPM Report Page 58 of 102

59 Part 2: Finding out what was wrong with you. When cancer is suspected, most people are referred to see a specialist doctor. 1. What was the outcome of your GP appointment? Sent for tests Referred to a Specialist Doctor Referred to a Hospital Review appointment with your GP Nothing further Other Sometimes people will have several tests before a diagnosis of cancer is given. 2. Who gave you the result of the test that showed that you definitely had cancer? GP... Surgeon... Medical oncologist... Radiation oncologist... Haematologist... Other (please specify) 3. Approximately how much time was spent explaining to you what was wrong? Less than 5 minutes 5 to 15 minutes 15 to 30 minutes More than 30 minutes Can t remember 4. Did you feel the time taken was adequate? Yes No 5. When you were first told what was wrong, did you receive any written information? Yes No Lung PPM Report Page 59 of 102

60 6. How useful did you find this written information? Very useful Useful Not very useful Can t remember 7. When you were first told what was wrong, were treatment options explained to you? Yes No 8. Is there anything else you feel is important that you would like to add? Lung PPM Report Page 60 of 102

61 WHEN YOU WERE TOLD YOU HAD CANCER The below questions relate to how you were told you had cancer. WHEN YOU WERE TOLD YOU HAD CANCER Yes, definitely Yes, I think so No, I don t think so No, definitely not When my doctor told me that I had cancer: a. It was at a face-to-face appointment b. I was told before the appointment that I could have a friend or family member with me if I wanted to. c. I clearly understood the explanation my doctor had given me Within a reasonable time of being told that I had cancer: d. I was given written information about cancer e. I was given a sheet with suggestions about questions that I might like to ask at my next appointment. f. I was told how I could get further information about cancer e.g. websites, booklets, cancer helpline Overall, when I was diagnosed with cancer: g. I received good quality care Lung PPM Report Page 61 of 102

62 Part 3: Treatment: Planning and Management, including Surgery. PLANNING CANCER TREATMENT / MANAGEMENT The questions below ask about care given to you by a health professional when treatment (e.g. surgery, radiotherapy, chemotherapy) was being planned. This means any professional involved in your cancer care, for example, doctors, nurses, radiation therapists, social workers, physiotherapists, psychologists etc. PLANNING CANCER TREATMENT / MANAGEMENT Yes, definitely Yes, I think so No, I don t think so No, definitely not The doctor(s) involved in planning my cancer treatment/ management: a. Gave me information about the advantages and disadvantages of different treatment options. b. Gave me information on the possible short-term side effects of treatment(s) (e.g. nausea, pain, fatigue). c. Gave me information on the possible long-term side effects of treatment(s) (e.g. reduced fertility, lymphoedema). d. Asked my permission to discuss my case with other health professionals (i.e. a multidisciplinary team) When my cancer treatment was being planned a health professional: e. Asked me how much information I wanted. f. Encouraged me to be involved with planning my treatment g. Encouraged me to ask any questions about treatment. h. Gave me information about support services (e.g. the cancer helpline, support groups or other services). i. Told me that counselling services were available if I wanted them. j. Told me about additional services (e.g. nutritional advice, occupational therapy, physiotherapy, support groups) that I could access during my cancer care. k. Checked if I had concerns about practical issues such as childcare, finances, or transport to and from the hospital. l. Made me feel comfortable to ask any questions I had. m. Checked that I understood the information provided to me Overall: n. The health professionals involved in my care helped me to make a treatment decision that I was comfortable with Lung PPM Report Page 62 of 102

63 SURGERY IF YOU HAVE HAD SURGERY, PLEASE ANSWER ALL QUESTIONS. IF YOU DID NOT HAVE SURGERY, GO TO NEXT THE SECTION, PART FOUR: TREATMENT JOURNEY, INCLUDING RADIOTHERAPY AND CHEMOTHERAPY. Surgery to treat cancer usually involves an operation to remove some or all of the cancer. This does not include biopsies. If you have had more than one surgery to treat cancer, please think about the first surgical treatment that you had when answering the questions. 1. Did you have surgery to treat cancer? Yes... No Did you have surgical treatment in a: Public hospital or public clinic... Private hospital or private clinic... Not sure Where did you have your surgical treatment? (Please indicate name of town/suburb or postcode of town/suburb where hospital is located) Town/Suburb OR Postcode Sometimes other treatments or tests need to be completed before a person is ready to be booked in for surgery. 4. Once you were ready to be booked in for surgery, how long did you wait until you actually had surgery? 3 days or less... More than 3 days, but within a week... More than a week, but within 2 weeks... More than 2 weeks, but within 4 weeks... More than a month... If the length of time was more than a week, was this due to: Personal decision to wait... Surgery waiting times Was the date of this hospital admission ever cancelled or postponed by the hospital? Yes, once Yes, more than once No, never Not sure Lung PPM Report Page 63 of 102

64 6. How far did you have to travel to get to the Hospital? Less than 10 km km km More than 100 km 7. During this admission did you feel you were given the opportunity to be involved in your care and treatment? Yes, all the time Yes, some of the time No, not really Can t remember 8. During this admission did you feel both yourself and your family were provided with adequate information about you? Too little information Just enough information Too much information Not sure 9. Before you left Hospital, did staff enquire about your social and home situation? Yes No Can t remember 10. Before you left Hospital were you offered any home support? Yes No Can t remember Type: 11. Before you left Hospital were you given written information about what you should or need to do after discharge? Yes No Can t remember Lung PPM Report Page 64 of 102

65 12. Before you left Hospital were you given a contact person if you had problems or were worried? Yes No Can t remember 13. Before you left Hospital were you given a clear plan of future treatment and Doctor appointments? Yes, and I completely understood what I was told Yes, and I understood some of what I was told Yes, but I did not understand what I was told No, this was not explained to me Can t remember 14. Before you left Hospital were you given information about social / financial benefits you could access? Yes No Can t remember 15. Did you feel your General Practitioner was provided with the appropriate information about your hospital admission and treatment? Yes No Can t remember 16. Would you like to comment about anything else that was important to you or difficult for you during this admission? Lung PPM Report Page 65 of 102

66 SURGERY IF YOU HAVE HAD SURGERY, PLEASE ANSWER ALL QUESTIONS. IF YOU DID NOT HAVE SURGERY, GO TO THE NEXT SECTION, PART FOUR: TREATMENT JOURNEY, INCLUDING RADIOTHERAPY AND CHEMOTHERAPY. SURGERY Yes, definitely Yes, I think so No, I don t think so No, definitely not Before having surgery for cancer I was given information about: a. Why the surgery was necessary b. How to prepare for surgery (e.g., if changes to other medications were needed) c. How I would feel after surgery Throughout my surgery planning and follow up: d. I was given information about what I could do to manage any physical side effects at home e. I was able to ask any questions that I had f. Any pain I had was well managed. If you did not experience any pain, please check this box. Lung PPM Report Page 66 of 102

67 Part 4: Treatment Journey, including Radiotherapy and Chemotherapy. THE FOLLOWING QUESTIONS RELATE TO POSSIBLE TREATMENTS YOU MAY HAVE HAD OTHER THAN SURGERY. TREATMENT JOURNEY Radiotherapy Chemotherapy Hormone Therapy Other a. How far did you have to travel for your treatment? Less than 10 km km km More than 100 km b. Were you given information on travel allowances you could access? Yes No Can't remember c. Was the purpose of this treatment explained to you prior to the first appointment? Yes, and I completely understood what I was told Yes, and I understood some of what I was told Yes, but I did not understand what I was told No, this was not explained to me Can t remember Lung PPM Report Page 67 of 102

68 TREATMENT JOURNEY CON'T Radiotherapy Chemotherapy Hormone Therapy Other d. On arrival for your treatment were you given the opportunity to ask questions? Yes, I was given plenty of opportunity Yes, but I was not given much time No Can t remember e. On arrival for your treatment were you asked about how you were feeling about your condition and treatment? Yes, by the Doctors Yes, by the Nurses Yes, by the Doctors & Nurses No Can t remember f. During your treatment were you given further explanations about what to expect? Yes, and I completely understood what I was told Yes, and I understood some of what I was told Yes, but I did not understand what I was told No, this was not explained to me Can t remember Lung PPM Report Page 68 of 102

69 TREATMENT JOURNEY CON'T Radiotherapy Chemotherapy Hormone Therapy Other g. During your treatment did you have adequate privacy? Yes, all of the time Yes, some of the time No Can t remember h. During your treatment did you experience any complications or side effects? Yes, major side effects/complications Yes, minor side effects/complications No Can t remember i. Did you feel these complications or side effects were managed well? Yes, very well Yes, but things could have been better No Can t remember Lung PPM Report Page 69 of 102

70 TREATMENT JOURNEY CON'T Radiotherapy Chemotherapy Hormone Therapy Other j. During this treatment were you offered any social or psychological supports? Yes, by the Doctors Yes, by the Nurses Yes, by the Doctors & Nurses No Can t remember k. Prior to leaving were you given a contact person should you become concerned? Yes: Who No Can t remember l. Prior to leaving were you given the opportunity to ask questions about any of your concerns? Yes No Can t remember Lung PPM Report Page 70 of 102

71 TREATMENT JOURNEY CON'T Radiotherapy Chemotherapy Hormone Therapy Other m. How frequent were your treatments planned for? Daily Weekly Fortnightly Monthly Other: n. Have any of your treatments been postponed or cancelled? Yes, once Yes, more than once No, never Not sure Lung PPM Report Page 71 of 102

72 TREATMENT JOURNEY CON'T Radiotherapy Chemotherapy Hormone Therapy Other o. During subsequent treatments were you given the opportunity to ask questions? Yes, all of the time Yes, some of the time No Can t remember p. During subsequent treatments did you feel socially and psychologically supported? Yes, all of the time Yes, some of the time No Can t remember q. During your treatment phase how often did your General Practitioner review you? Weekly or more often Every couple of weeks Monthly Infrequently Not at all Can t remember Lung PPM Report Page 72 of 102

73 TREATMENT JOURNEY CON'T Radiotherapy Chemotherapy Hormone Therapy Other r. During your treatment did you feel your General Practitioner had been kept informed about you? Yes, all of the time Yes, some of the time No Can t remember s. What have been your main concerns been about during your treatment? Actual treatment and side effects My illness and prognosis My physical well being My social situation My family and significant others My financial situation Coping with cancer Other t. Is there anything you feel you needed during your treatments that you did not get? u. Would you like to comment about anything else that is important to you about your treatment journey? Lung PPM Report Page 73 of 102

74 RADIOTHERAPY IF YOU HAVE HAD OR ARE CURRENTLY HAVING RADIOTHERAPY, PLEASE ANSWER ALL QUESTIONS. IF YOU DID NOT HAVE OR ARE NOT CURRENTLY HAVING RADIOTHERAPY, GO TO THE NEXT QUESTION, CHEMOTHERAPY. Radiotherapy is the use of radiation to destroy cancer cells in the body, to slow the growth of cancer, or to reduce the symptoms of cancer. External radiotherapy is given using a machine that directs radiation onto the body. Internal radiotherapy (brachytherapy) involves temporarily putting thin tubes, seeds or rods containing radioactive material inside the body. 24. Did you have radiotherapy treatment for cancer? Yes... No Did you have radiotherapy treatment in a: Public hospital... Private hospital... Not sure Where did you have your radiotherapy? (please indicate name of town/suburb or postcode of town/suburb where hospital is located) Town/Suburb OR Postcode 27. Did you have to arrange different accommodation while receiving radiotherapy? For example, this might have been at the home of a friend or relative or in a hotel or hostel Yes... No... Sometimes other treatments or tests need to be completed before a person is ready to start radiotherapy. 28. Once you were ready to start radiotherapy, how long did you wait until having your first radiotherapy treatment? 3 days or less... More than 3 days, but within a week... More than a week, but within 2 weeks... More than 2 weeks, but within 4 weeks... More than a month... Lung PPM Report Page 74 of 102

75 If the length of time was more than a week, was this due to: Personal decision to wait... Radiotherapy treatment waiting times... RADIOTHERAPY IF YOU HAVE HAD OR ARE CURRENTLY HAVING RADIOTHERAPY, PLEASE ANSWER ALL QUESTIONS. IF YOU DID NOT HAVE OR ARE NOT CURRENTLY HAVING RADIOTHERAPY, GO TO THE NEXT QUESTION, chemotherapy. RADIOTHERAPY Yes, definitely Yes, I think so No, I don t think so No, definitely not Before starting radiotherapy for the first time I was given information about: a. Why the radiotherapy was necessary b. How to prepare for radiotherapy (e.g., if changes to other medications were needed) c. What having radiotherapy would feel like d. How I would feel after radiotherapy Throughout my radiotherapy treatment and follow-up: e. I was given information about what I could do to manage any physical side effects at home f. I was able to ask any questions that I had g. Any pain I had was well managed If you did not experience any pain, please check this box. Lung PPM Report Page 75 of 102

76 CHEMOTHERAPY IF YOU HAVE HAD OR ARE CURRENTLY HAVING CHEMOTHERAPY, PLEASE ANSWER ALL QUESTIONS. IF YOU DID NOT HAVE OR ARE NOT CURRENTLY HAVING CHEMOTHERAPY, GO TO THE NEXT SECTION, FINISHING CANCER TREATMENT. Chemotherapy is the use of drugs, which aim to destroy cancer cells in the body, or to stop them from multiplying and spreading. It can be given through a drip that goes into a needle in your vein, through an injection, as a tablet that you swallow, or as cream that s put on surface of the skin. 29. Did you have chemotherapy treatment for cancer? Yes... No Did you have chemotherapy treatment in a: A public hospital... A private hospital... Somewhere else... please specify Not sure Where did you have your chemotherapy? (please indicate the name of the town/suburb or the postcode of the place where you had chemotherapy?) Town/Suburb OR Postcode 32. Did you have to arrange different accommodation while receiving chemotherapy? For example, this might have been at the home of a friend or relative or in a hotel or hostel Yes... No... Lung PPM Report Page 76 of 102

77 Sometimes other treatments or tests need to be completed before a person is ready to start chemotherapy treatment. 33. Once you were ready to be booked in for chemotherapy, how long did you wait until your first chemotherapy treatment? 3 days or less... More than 3 days, but within a week... More than a week, but within 2 weeks... More than 2 weeks, but within 4 weeks... More than a month... If the length of time was more than a week, was this due to: Personal decision to wait... Chemotherapy treatment waiting times If you have not finished treatment, are you currently having: Chemotherapy... Radiotherapy... Hormone therapy... Other (please specify) Lung PPM Report Page 77 of 102

78 CHEMOTHERAPY IF YOU HAVE HAD OR ARE CURRENTLY HAVING CHEMOTHERAPY, PLEASE ANSWER ALL QUESTIONS. IF YOU DID NOT HAVE OR ARE NOT CURRENTLY HAVING CHEMOTHERAPY, GO TO THE NEXT SECTION - FINISHING CANCER TREATMENT. CHEMOTHERAPY Yes, definitely Yes, I think so No, I don t think so No, definitely not Before starting chemotherapy for the first time I was given information about: a. Why the chemotherapy was necessary b. How to prepare for chemotherapy (e.g., if changes to other medications were needed) c. How I would feel after chemotherapy Throughout my chemotherapy treatment and follow up: d. I was given information about what I could do to manage any physical side effects at home e. I was able to ask any questions that I had f. Any pain I had was well managed. If you did not experience any pain, please check this box. g. Any nausea I had was well managed. If you did not experience any nausea, please check this box Lung PPM Report Page 78 of 102

79 FINISHING CANCER TREATMENT IF YOU HAVE FINISHED TREATMENT, PLEASE ANSWER ALL QUESTIONS BELOW. IF YOU HAVE NOT YET FINISHED TREATMENT, PLEASE GO TO THE NEXT SECTION - CONTINUITY OF CARE. FINISHING CANCER TREATMENT Yes, definitely Yes, I think so No, I don t think so No, definitely not Towards the end of cancer treatment I was given: a. A written plan that included information about my cancer treatments and recommended follow-up Towards the end of cancer treatment I was given information about: b. Which follow up tests I might need c. When I would need to have follow-up tests d. The purpose for taking each of my medications e. How to take each of my medications, including how much I should take and when. f. How to manage any ongoing symptoms or side effects. g. Which new symptoms might mean that cancer has come back. h. What I could do to stay as healthy as possible in the future (e.g. information about exercise, diet, stopping smoking). i. How people commonly feel emotionally after finishing treatment j. Where I could get extra support if I needed it Overall, toward the end of cancer treatment: k. I knew where I could get help for any problems related to cancer that might come up over the next few months Lung PPM Report Page 79 of 102

80 CONTINUITY OF CARE THE QUESTIONS BELOW RELATE TO YOUR CONTINUITY OF CARE. IT HELPS US IDENTIFY IF YOUR CARE WAS COORDINATED. CONTINUITY OF CARE Yes, definitely Yes, I think so No, I don t think so No, definitely not From when I was diagnosed until now: a. There has been a health professional that I could contact if I had any questions about my care. b. My GP has been kept well informed about my cancer care. c. The health professionals involved in my care appeared well informed about my cancer care If more than one treatment centre was involved in your care, please answer the following question: The treatment centres involved in my care: d. Were well informed about the care I received from other hospitals or health services e. Co-ordinated my appointments to suit my needs THANKYOU FOR TAKING THE TIME TO COMPLETE THIS QUESTIONNAIRE. Lung PPM Report Page 80 of 102

81 Appendix 4: Background to the Patient Pathways Mapping Project A4.1 Frameworks to guide cancer reform in Victoria The need for improved delivery of cancer services along with improved outcomes for patients and their families has been identified as a priority for both State and Federal governments. The Victorian Department of Health has a significant cancer reform agenda that aims to improve planning and delivery of treatment and support to patients so that appropriate care is provided in a timely manner as close to the patients home as possible. 9 Two leading policy documents guiding Victoria s cancer reforms are the Cancer Services Framework and Victoria s Cancer Action Plan (VCAP). A4.1.1 Cancer Services Framework for Victoria In 2002, the Department of Health (formerly the Department of Human Services) commissioned the development of a Cancer Services Framework for Victoria. 10 The principles upon which the Cancer Services Framework has been based include: multidisciplinary cancer care to ensure effective and efficient patient management maximal geographic access for patients and their carers/families high quality and safe cancer services. The Cancer Services Framework identified structures and processes that support optimal cancer care. These include the development of the Integrated Cancer Services (ICS) to drive change at the local level, and the development of the Patient Management Frameworks to guide the delivery of consistent cancer care for a range of tumour streams. The Cancer Services Framework also targets four priority service improvement areas for reform as: multidisciplinary care care coordination supportive care reducing unwanted variation in practice (quality monitoring and support) A4.1.2 Victorian Cancer Action Plan Released in December 2008, Victoria's Cancer Action Plan has been developed to provide policy leadership and common goals for Government, health services, research institutes, peak bodies, health professionals and consumer organisations working in the cancer control arena in Victoria. VCAP has measurable targets across four key action areas including prevention, research, treatment and support Clinical Networks: A framework for Victoria 2008 Department of Human Services 10 A Cancer Services Framework for Victoria 2003 Department of Human Services 11 Victoria s Cancer Action Plan , 2008 Department of Human Services Lung PPM Report Page 81 of 102

82 The relationship between the various structures and components of the cancer reform to drive service improvement is depicted in Figure 3. Figure 3: Systematic approach to quality in cancer services Achieving best practice cancer care, A guide for implementing multidisciplinary care 2007 Department of Human Services Lung PPM Report Page 82 of 102

83 A4.2 The Victorian Integrated Cancer Services The Cancer Services Framework proposal of the formation of a service system led to the establishment of the Integrated Cancer Services (ICS) in 2004, which includes three metropolitan and five regional ICS based on specified geographic populations and one state wide paediatric service. The role of the Integrated Cancer Services is to build partnerships; improve cancer care; and plan cancer services across a geographic area based on access, appropriateness and effectiveness. 13 Figure 4: Map of the Victorian Integrated Cancer Services Each ICS is comprised of clusters of hospitals and associated health services that deliver services for people with all type of cancers within a geographic area. The philosophy of an ICS is that hospitals and primary and community health services develop integrated care and defined referral pathways for the populations they serve. This promotes more effective local coordination of care for cancer patients, and a more rational, evidence-based approach to cancer service planning and delivery, and provides a platform through which improvements in cancer service delivery and patient care can be implemented Clinical excellence in cancer care, a model for safety and quality in Victorian cancer services 2007 Department of Human Services 14 A Cancer Services Framework for Victoria 2003 Department of Human Services Lung PPM Report Page 83 of 102

84 A4.3 Establishment of tumour streams The Cancer Services Framework for Victoria has recommended that organ or system specific tumour streams be adopted to reduce variation in care. 15 Tumour streams were developed as a means to drive service improvement and ensure consistency across Victoria. As ten types of tumours account for more than 90 per cent of the total incidence of cancer in Victoria, the recommended tumour streams were therefore classified as: 1) Genito-urinary cancers, including cancers of the prostate, bladder, kidney, and testis 2) Colorectal cancer 3) Breast cancer 4) Lung cancer 5) Skin cancers, notably melanoma 6) Haematological malignancies, encompassing lymphomas, leukaemia, and myeloma 7) Gynaecological cancers 8) Head and neck cancers 9) Upper gastro-intestinal cancers, encompassing cancers of the oesophagus, stomach, pancreas, and hepato-biliary system 10) Central nervous system cancers The concept of tumour streams includes the development of local collaborating tumour groups based on the ten tumour streams, statewide mechanisms to support tumour stream development, standards of care and facility standards, clinical and performance indicators and classification of cancer services based on the range of services they can provide. A4.4 Patient Management Frameworks Cancer care in Victoria is guided by the Patient Management Frameworks (PMF), published by the Victorian Department of Health (formerly the Department of Human Services) in The PMFs were developed to provide a consistent statewide approach to care management across the ten tumour streams and are intended to improve patient outcomes by focussing discussion on the critical steps of the patient journey in order to identify priority areas for improvement. They aim to reduce unwanted variation in care and describe optimal referral pathways for cancer care from diagnosis to end-of-life care, inclusive of treatment and supportive care. The PMFs have been developed in collaboration with a wide range of practitioners, consumers and carers. Wherever possible, they are based on current best practice, including clinical guidelines, care pathways, standards and research. In many cases, however, they are a statement of consensus regarding currently accepted approaches to treatment A Cancer Services Framework for Victoria 2003 Department of Human Services 16 Patient management frameworks 2006 Department of Human Services 17 Lung PPM Report Page 84 of 102

85 The PMFs: Provide a clear description of the care pathway, identifying the critical points along that pathway and the optimal model of care Set out the key requirements for the provision of optimal care Guide the patient journey to ensure patients with cancer and their families receive optimal care and support The PMFs identify seven critical steps in the patient journey, as represented in Figure 5 below. Whilst these seven steps are represented as a linear model, it is clear that in practice patient care does not always occur this way. It is important for all patients to be assessed and managed appropriately throughout each stage of their individual journey, however, not all patients will progress through each of the seven steps of the PMF due to factors such as timing of diagnosis, prognosis, management decisions and patient decisions. It is also important to note that the PMFs are not designed for accreditation purposes, but may be used to facilitate local benchmarking, service mapping and service development. They are not rules and do not carry a sense of prescription. Figure 5: The seven steps of the patient journey identified in the PMFs To accompany the PMFs, a toolkit was also developed by the Department of Health to assist the ICS to identify priority areas when implementing the PMFs (Appendix 1).This toolkit provides a guide to evaluate the implementation of the PMFs across the seven stages of the patient journey (as presented in Figure 5), Lung PPM Report Page 85 of 102

86 for each of the four priority service improvement areas for reform (multidisciplinary care, care coordination, supportive care, reducing unwanted variation in practice). The guide contains a series of prompts/questions in order to identify the gaps and successes in implementation of the PMFs. This guide was adopted for use in the current project across all tumour streams in order to provide a direct link between the relevant PMF and the successes/gaps in the implementation of the PMFs in the Hume region. A4.5 The four priority service improvement areas for statewide reform As described previously, the Cancer Services Framework for Victoria has identified the four priority service improvement areas for reform as: multidisciplinary care care coordination supportive care reducing unwanted variation in practice (quality monitoring and support) It is these priority areas that serve as the foundation for the seven steps in the care pathway. Therefore, the focus of this Patient Pathways Mapping Project was to investigate the success with which the PMFs have been implemented at each step of the patient pathway, across each of these four key priority areas. Accordingly, the results of this project have been presented under these four headings, in order to describe the successes and gaps in the care pathway for Head and Neck cancers in the Border/East Hume Cancer Network. Further background information about these four priority areas is presented below. A4.5.1 Multidisciplinary care Multidisciplinary care can broadly be defined as an integrated team approach to health care in which medical and allied health care professionals consider all relevant treatment options and develop collaboratively an individual treatment plan for each patient. 18 The evidence for improved survival as an impact of multidisciplinary cancer care has not been strong, however, reduced time to diagnosis and treatment, improved adherence to guidelines, improved inclusion in clinical trials, improved patient satisfaction and improved education and collegiality for members of the MDT, have all been documented through audits of MDT records and surveys of MDT members. The three strategic directions that guide the improved multidisciplinary care in Victoria are: 19 creating and supporting effective multidisciplinary teams; establishing and strengthening multidisciplinary meetings; and building effective team linkage across and between ICS. 18 Achieving best practice cancer care, A guide for implementing multidisciplinary care 2007 Department of Human Services 19 Multidisciplinary Care Literature review June 2012 Department of Health Lung PPM Report Page 86 of 102

87 Figure 6: Victoria s model for multidisciplinary care Lung PPM Report Page 87 of 102

88 Multidisciplinary Team Meetings (MDTMs) are defined as regularly scheduled meeting of core and invited team members for the purpose of prospective treatment and care planning of newly diagnosed cancer patients, as well as those requiring review of treatment plans or palliative care. 20 The objectives of MDTMs are: to provide an opportunity for multidisciplinary team discussion of all newly diagnosed and review cases of cancer within an appropriate timeframe to facilitate effective treatment planning to determine, in light of all available information and with reference to the evidence base, the most appropriate treatment plan for each individual patient to provide educational opportunities for team members and trainees to provide peer support to team members 21 A4.5.2 Care coordination Cancer care coordination aims to ensure that care is delivered in a logical, connected and timely manner so that the medical and personal needs of patients and their families and carers are met. 22 Cancer patients are often seen by variety of health professionals across multiple health services and across different health sectors public/ private, acute/ primary health, metropolitan and rural. It is acknowledged that effective care coordination requires strategies for improvement at every level systems, organisational, team and individual levels. In the context of cancer, care coordination encompasses multiple aspects of cancer care delivery including multidisciplinary team meetings, psychosocial assessment and the provision of required care, referral practices, data collection, development of common protocols, information provision and individual clinical treatment. A4.5.3 Supportive care Supportive care is an umbrella term for all services, both generalist and specialist, that may be required to support people with cancer and their carers. 23 It includes self-help and support, information, psychological support, symptom control, social support, rehabilitation, spiritual support, palliative care and bereavement care. Supportive care is required throughout the diagnostic, treatment and follow-up phases of care and is increasingly seen as a core component of cancer care for those affected by cancer. In the context of cancer, supportive care needs include: physical needs (for example, pain, fatigue), psychological needs (for example, anxiety, distress), social needs (for example, practical supports, carer needs), information needs (for example, regarding diagnosis, prognosis, types of treatment), spiritual needs (for example, addressing hopelessness, despair) Multidisciplinary Team Meeting Toolkit 2006 Department of Human Services 21 Multidisciplinary team meetings in Victoria, Monitoring progress towards achieving best practice cancer care Department of Health 22 Linking cancer care: A guide for implementing coordinated cancer care 2007 Department of Human Services 23 Patient management frameworks 2006 Department of Human Services 24 Patient management frameworks 2006 Department of Human Services Lung PPM Report Page 88 of 102

89 A4.5.4 Reducing variations in care Unwanted variations in care can be reduced by the introduction of processes and guidelines that assist in the standardising of cancer care. These have the potential to improve the safety and quality in Victorian cancer services. 25 One approach to reduce unwanted variations in cancer care was the development of defined tumour streams, in order to provide a framework for a consistent, evidence-based approach to care and hence reduce unacceptable variations. Tumour streams include consistent approaches to care for a particular tumour stream supported by: agreed treatment protocols, monitoring of best practice, identifying areas for service improvement, implementing system change to support service improvement and evaluating the impact of service improvement. The Department of Health framework document Clinical Excellence in Cancer Care provides a model for safety and quality in Victorian cancer services. It is not an accreditation system, but instead is designed to support and strengthen the fundamental aspects of cancer care. This model recognises that cancer services operate within an existing health care system and therefore does not seek to duplicate systems, but instead to align cancer service priorities with those of the health services. The key elements of the model (presented in Figure 7) are: Collaboration and partnerships between quality units and cancer services Clinician and consumer led service improvement Valid and reliable data used to identify gaps in safety and quality and to monitor improvements following change Based on best practice and evidence based care Use of clinical quality tools such as indicators, case and peer review, and audit in a systematic cycle of analysis, discussion, action, follow up and feedback to participating health services As described by the Department of Health, the model identifies six clinical dimensions of cancer care quality to guide patient care monitoring and improvement; and four structural components necessary to provide a solid organisational foundation for quality. 25 Clinical excellence in cancer care, a model for safety and quality in Victorian cancer services 2007 Department of Human Services Lung PPM Report Page 89 of 102

90 Figure 7: Model for safety and quality in Victorian cancer services Lung PPM Report Page 90 of 102

91 Appendix 5: Profile of the Hume Region A5.1 Geographic coverage A5.1.1 Overview of the Hume cancer networks Following extensive consultation and in line with the policy, "Clinical Networks: A Framework for Victoria", Hume RICS formed two clinical networks in December 2008 the West Hume and Border / East Hume Cancer Networks, as depicted in Figure 8 below. This is considered to better mirror clinical practice across the Goulburn Valley and Hume Highway corridors and enable more rapid cancer service development. Figure 8: Map of the Hume RICS West Hume and Border/East Hume Cancer Networks Whilst the ICS are a Victorian Department of Health Initiative, Hume RICS also works closely with cancer services in southern New South Wales (NSW). In May 2009, the Border Cancer Collaboration (BCC) transitioned into the Border / East Hume Cancer Network of Hume RICS and continues to address issues for the community to support cross border cancer services. As shown in Table 14 and Figure 9, there are a number of LGAs from northeast Victoria and Southern/Border NSW that collectively form the catchment for cancer services provided in the Hume region. The LGAs that have been considered for both cancer incidence and population data in this Patient Pathway Mapping Project are listed in Table 14. Lung PPM Report Page 91 of 102

92 Table 14: Victorian and NSW LGAs considered in this Patient Pathways Mapping Project Victorian LGAs NSW LGAs Wodonga Indigo Towong Alpine Wangaratta Benalla Mansfield Moira Albury Greater Hume Shire Corowa Shire Urana Jerilderie Berrigan Murray Deniliquin Greater Shepparton Strathbogie Mitchell Murrindindi Figure 9: Map of the Local Government Areas from Victoria and NSW that form part of the broader population catchment for cancer services in the Hume region PCP and ML regional and southern NSW boundaries 2011, Extract from Lung PPM Report Page 92 of 102

93 A5.1.2 Sub regions within the Hume cancer networks For the specific purposes of patient flow data analysis in this project (as presented in Section 5.2), the Hume region was divided into four sub regions: Goulburn Valley, Lower Hume, Central Hume and Upper Hume to align with the Primary Care Partnership (PCP) Local Government Area (LGA) divisions, as presented in Figure 10.This division allowed analysis of data to determine whether residents of each the four sub-regions travelled to another sub-region (or outside of the Hume region altogether) to receive cancer care. Unfortunately, as the Albury Wodonga Health- Albury Campus does not yet submit data in to the VAED, inpatient activity delivered at this service site was not able to be determined and is not included in this analysis. Figure 10: Primary Care Partnership divisions in the Hume region 27 A5.2 Population The population of the Hume region (Victoria) by Local Government Area is presented below in Table 15. Also included in Table 15 are population data for NSW LGAs that are part of the broader population catchment for cancer services provided in the Hume region. Presented in this table are the population figures for Albury, as well as the combined population figures for Corowa, Greater Hume, Berrigan, Deniliquin, Murray, Conargo, Jerilderie and Urana (collectively referred to in this report as Southern/Border NSW). As shown in Table 15, in 2011 there were nearly 380,000 residents of these Victoria and NSW Local Government Areas, which is projected to increase by 9.7% to 413,000 in 2021 and by 14.4% to 431,000 in Service and Workforce Planning, Portfolio Services and Strategic Projects Division Feb 2009 Department of Human Services Lung PPM Report Page 93 of 102

94 28 29 Table 15: Hume region, Albury and Southern/Border NSW population forecasts LGA Name Greater Shepparton 59,202 63,127 66,282 69,047 71,509 Moira 27,946 29,478 30,688 31,816 32,920 Strathbogie 9,615 9,843 10,067 10,297 10,547 Mitchell 32,040 37,055 42,510 48,624 55,290 Murrindindi 14,179 14,316 14,666 15,244 15,944 Wodonga 34,504 37,367 39,736 42,128 44,337 Indigo 15,367 16,207 16,758 17,253 17,873 Towong 6,247 6,268 6,190 6,098 6,020 Benalla 13,968 14,418 14,748 15,118 15,536 Alpine 12,574 13,049 13,406 13,773 14,152 Wangaratta 27,318 28,199 28,910 29,655 30,457 Mansfield 7,445 8,251 9,072 9,958 10,914 Albury (NSW) 48,545 50,617 52,430 54,120 55,583 Southern/Border NSW* 49,033 48,857 50,273 50,496 50,521 TOTAL 357, , , , ,603 * Combined figures for the LGAs of Corowa, Greater Hume, Berrigan, Deniliquin, Murray, Conargo, Jerilderie and Urana 28 Victoria in Future 2012: Population and household projections for Victoria and its regions , Department of Planning and Community Development 29 NSW Statistical Local Area Population Projections , NSW Department of Planning Lung PPM Report Page 94 of 102

95 The LGAs with the most dramatic projected growth in the decade between 2011 and 2021 as shown in Table 16 are Mitchell (31%), Mansfield (21%), Wodonga (13%), and Greater Shepparton (9%). This highlights the need for appropriate service planning to accommodate the population growth in these geographic areas. Table 16: Hume, Albury and Southern/Border NSW population change LGA Name % Change Greater Shepparton 63,127 69, % Moira 29,478 31, % Strathbogie 9,843 10, % Mitchell 37,055 48, % Murrindindi 14,316 15, % Wodonga 37,367 42, % Indigo 16,207 17, % Towong 6,268 6, % Benalla 14,418 15, % Alpine 13,049 13, % Wangaratta 28,199 29, % Mansfield 8,251 9, % Albury 50,617 54, % Southern/Border NSW* 49,857 50, % * Combined figures for the LGAs of Corowa, Greater Hume, Berrigan, Deniliquin, Murray, Conargo, Jerilderie and Urana Lung PPM Report Page 95 of 102

96 A5.3 Cancer Profile Figure 11 presents the total cancer incidence for the 5 year period by Local Government Area for the Hume region (Victoria), the NSW LGA of Albury, and the combined LGAs of Corowa, Greater Hume, Berrigan, Deniliquin, Murray, Conargo, Jerilderie and Urana (referred to collectively as Southern/Border NSW). Figure 11: Total cancer incidence by LGA, Hume region, Albury and Southern/Border NSW for the 5-year period Greater Shepparton Moira Strathbogie Mitchell Murrindindi Wodonga Indigo Towong Benalla Alpine Wangaratta Mansfield Albury Southern NSW , Data obtained from Victorian Department of Health and NSW Cancer Registry Lung PPM Report Page 96 of 102