Supportive Care Audit 2013-2014 NEMICS Region Melissa Shand Service Improvement Facilitator NEMICS November 2015
Acknowledgments Mandy Byrne NEMICS Cancer and Data Information Analyst Page 2 of 32
Table of Contents 1. Executive summary... 5 2. Background... 7 3. Methodology... 7 4. Results and findings... 8 4.1. Population... 8 4.2. Supportive care screening across NEMICS... 11 4.3. Problems identified... 18 5. Screening Outcomes... 27 5.1. Referrals... 27 6. Discussion... 30 6.1. Methodology... 30 6.2. Overview of results... 30 7. Recommendations... 31 List of graphs Graph 1 Age group at time of screen...9 Graph 2 Age at time of screen: tumour type... 10 Graph 3 Percentage of screens by tumour type... 11 Graph 4 Percentage of screens by... 13 Graph 5 Screening clinician... 14 Graph 6 Distress score: percentage of total screens... 15 Graph 7 Percentage of distress score category by tumour type... 16 Graph 8 Number of screens by distress score category and... 17 Graph 9 All problems identified: highest to lowest... 20 Page 3 of 32
List of tables Table 1 Number of screens per health service...8 Table 2 Screens declined...9 Table 3 Age group at time of screen...9 Table 4 Age of time of screen: tumour type... 10 Table 5 Screening at Eastern Health by tumour type... 12 Table 6 Percentage of screens by... 13 Table 7 Screening clinician... 14 Table 8 Distress score: percentage of total screens... 15 Table 9 Percentage of distress score category by tumour type... 16 Table 10 Number of screens by distress score category and... 17 Table 11 Percentage of distress score by... 17 Table 12 All problems identified by domain... 18 Table 13 Problems identified: highest to lowest (1 in 5 people identify problem)... 21 Table 14 Problems identified by : fatigue... 21 Table 15 Problems identified by : worry... 22 Table 16 Problems identified by : Nervousness... 22 Table 17 Problems identified by : Sadness... 22 Table 18 Problems identified by : Sleep... 23 Table 19 Problems identified by : Pain... 23 Table 20 Problems identified by : Fears... 23 Table 21 Problems identified by : Eating... 24 Table 22 Problems identified by : Memory / concentration... 24 Table 23 Problems identified by : Loss of interest in usual activities... 24 Table 24 Problems identified by : Constipation... 25 Table 25 Problems identified by : Skin dry / itchy... 25 Table 26 Problems identified by : Depression... 25 Table 27 Problems identified by : Getting around... 26 Table 28 Problems identified by : Breathing... 26 Table 29 Referral status for NEMICS... 27 Table 30 Referrals made: most often to least often... 28 Table 31 Referrals offered but declined... 29 Page 4 of 32
Supportive Care Audit 2013-2014 NEMICS 1. Executive summary A key priority of the cancer reform agenda is the identification and management of supportive care needs in the cancer population. A priority underpinned by the 2009 policy: Providing optimal cancer care supportive care policy for Victoria. In 2010 supportive care screening using the NCCN Distress Thermometer and Problem Checklist was implemented across Victoria. The 2013 2014 NEMICS regional supportive care audit was initiated by NEMICS supportive care project officers. This is the first time an audit has been undertaken to identify the supportive care needs of the NEMICS cancer population. From the audit data collected, individual health service information was extracted and evaluated to provide information on the supportive care needs of their cancer population. Using the NCCN Distress Thermometer and Problem Checklist, NEMICS health services audited a total of 2182 screens on 1784 individual patients over an 18 month period, 1 January 2013 to 30 June 2014. This report reflects the findings from these screens and not from the whole NEMICS region oncology population during the time period. Oncology services are provided by four public health services within the NEMICS region: Austin Health, Eastern Health, Mercy Hospital for Women and Northern Health. Of the 2182 screens audited (including completed and declined screens): 1056 were completed at Austin Health, 420 at Eastern Health, 105 at Mercy Hospital for Women and 601 at Northern Health. The majority were completed in the day oncology unit (30.2%) and specialist clinics (29.7%). Patients with breast (28.1%), haematological (13.5%) colorectal (11.8%), lung (11.2%) and genitourinary (9.5%) cancers were screened most. This may reflect treatments received (surgery alone compared with surgery plus chemotherapy) and available systems and resources in place to support screening. In addition most screens were completed by a nurse (40.5%) or specialist nurse (90.1%) Of the 2182 screens audited across NEMICS health services a total of 134 were declined resulting in 2048 screens that completed the distress thermometer and problem checklist. Reporting of results will now include the 2048 screens. A total of 46.4% of patients recorded a distress score of less than 4 and 49% of patients identified a score of 4 or greater; 4.6% of patients did not complete a distress score. Over 50% of patients of the palliative care ward and the oncology ward, and those attending specialist clinics reported a distress score of 4 or above. Whilst the precise meaning of distress scores is debated, knowledge that patients attending these services may report greater distress could assist services to monitor patients and provide self-management support or early interventions to reduce the impact of distress. A total of 13843 problems were identified across problem domains with a range of problems identified regardless of tumour type. Considered by domain, problems were recorded as follows: practical domain 5.1%; family domain 3.0%; emotional domain 30.4%; and physical domain 61.2%. Different numbers of problems are listed in each domain and this needs to be taken into account when interpreting these figures. The percentage of problems recorded for each domain varied little across health services. Emotional and physical domain problems featured with fatigue and worry identified by over half of the people screened and nervousness, sadness, sleep, pain and fears identified by over 30% of the sample. Problems with eating, memory / concentration, loss of interest in usual activities, constipation, skin dry / itchy, depression, getting around and breathing were also commonly reported. Page 5 of 32
Despite key commonly identified problems; problems reported by individual patients varied considerably. From a service-wide perspective, this variance poses challenges for systematically identifying and addressing individual patients specific needs. This may support the use of a checklist to efficiently enable individual patients to flag specific problems. Checklists enable patients to be active in identifying their problems and educates them that experiencing problems is common, and to ask for help. Building patient health literacy to actively recognise and report supportive care problems is important in the setting of great variance in problems reported, increasing numbers of cancer patients and limited resources. At the system-level, opportunities exist to scope existing/develop new evidence-based information resources, interventions and services to more systematically address commonly reported problems. Given the prevalence of fatigue and worry, thought could be given to systematically providing at risk patients early on with evidence-based resources to aid patient health literacy and self-management of these problems. Understanding the problems most commonly reported by health service, and tumour type could assist cancer services and units to take a regional and systematic approach to providing targeted strategies, information and referrals/services early. Building capacity in terms of triage and referral following screening is a work in progress across NEMICS health services. Due to variations in the quality of referral information recorded in the medical record, and the lack of available data from Northern Health, limited conclusions can be drawn from audited referral data. Of the 1242 referrals recorded as offered, 855 (69%) were made. Referrals audited included only first tier referrals as a result of the supportive care screen; additional referrals made following assessment by the clinician/service referred to were not audited. Most referrals (96.4%) were made to services provided by NEMICS health services. Of these, the services most referred to were: social work (24.2%), dietetics (15.7%), GP / doctor (9.7%), physiotherapy (8.5%) and psychology (8.3%). Only 24 of the 855 (2.8%) referrals made were for community services. Data was not collected on why referrals were made to individual services; however given the high number of screens identifying problems in the emotional domain, the higher number of referrals to social work, psychology and pastoral care (320 referrals or 44%) would be expected. In relation to the problems identified in the physical domain, there were 376 referrals or 13.6% made to dietetics, GP / doctor, physiotherapy, occupational therapy and nursing. Given the high prevalence of fatigue amongst the audit sample, the relatively low rates of referral to physiotherapy/occupational therapy/group fatigue management interventions or community rehabilitation services seem unusual and may warrant further enquiry. These audit findings provide an opportunity for NEMICS health service oncology services to review a sample of needs identified by tumour type and screening location to consider whether the right supports are in place to address identified needs. The majority of referrals made following screening were to services offered by health services. Building relationships with other NEMICS health service oncology services, cancer-related non-government organisations and community health and rehabilitation services could assist oncology staff to understand the services available, increase access to a broad range of varied services and provide cancer patients with a choice to receive their support services within their local community. NEMICS has commenced initial work to strengthen these relationships and referral pathways. Audit findings varied across individual NEMICS health services. Each service has been provided with their own summary report providing an opportunity to evaluate and review their patients reported problems, and triage and referral capacities, identifying areas of potential service improvement. This report summarises the regional supportive care problems identified, distress levels and actions taken providing opportunities for NEMICS to consider potential regional strategies to better address supportive care needs. Page 6 of 32
2. Background A key priority of the cancer reform agenda is the identification and management of supportive care needs in the cancer population. A priority underpinned by the 2009 policy: Providing optimal cancer care supportive care policy for Victoria. Supportive care (SC) screening using the NCCN Distress Thermometer (DT) and Problem Checklist commenced across the north eastern region of Melbourne in 2010 via a grants program funded by NEMICS. Health services included: Austin Health, Eastern Health, Mercy Hospital for Women and Northern Health. Project officers have been located in each health service to drive implementation and raise awareness of the supportive care needs of cancer patients. In 2013, NEMICS developed a supportive care screening database to assist health services to monitor and report on the supportive care issues identified through screening. The database was based on the items within the 2013 NCCN DT and Problem Checklist. (Appendix 1) 3. Methodology Screens included in this audit report occurred between 1 January 2013 and 30 June 2014. Cases were identified using the following methods: 1. Cases identified via the 2013 Department of Health Performance Indicator audit. 2. Alternative wording option: As auditing capacity and methods for data collection varied between health services, individual services identified cases differently: Eastern Health: The SC project officer submits six monthly project reports to NEMICS. For these reports all supportive care screens undertaken at Eastern Health for a one month period were entered into the database. Data was collected for February 2013 and 2014, and June 2013. Austin Health: In 2013 the SC project officers undertook a wider SC screening audit. Admission lists for day oncology, radiotherapy and the inpatient oncology wards were reviewed and all screens for the timeframe selected were entered. This audit included repeat screens. Mercy Hospital for Women: All supportive care screens undertaken at Mercy Hospital for Women (MHW) between 1 January 2013 and 30 June 2014 were identified and audited. Northern Health: The SC project officers provided an electronic extract of all supportive care screens offered over the 18 month period. The data was provided in a raw coded format. The NEMICS data analyst reconstructed the data to allow importation into the NEMICS SC screening analysis database. Limited data on triage and referrals was available so these were excluded from the analysis. Duplicates were removed if a screen for the same person on the same date was submitted from more than one data source. Page 7 of 32
The following data was collected for all screens, including those that were declined: Tumour type Age at time of screen Location of screening Treatment at time of screening Designation of screening clinician The following additional data was collected on completed screens: Distress Score Problems identified on the problem checklist Intervention that occurred: - Did a discussion take place to address the need/s identified? - Was information provided? - Was a referral was made? - Service/s referred to This data provides a snapshot of screening across NEMICS health services. Included are newly diagnosed cases of cancer as well as repeat screening for patients who have contact with individual services over a long period of time or who have attended a number of treatment modalities or units in which screening occurs. The number of screens audited at each health service does not correlate to the number of cancer patients treated by that health service over the time period. 4. Results and findings 4.1. Population A total of 1784 patients were audited and 2182 screens recorded in the database. Screens recorded include both completed screens and declined screens. Table 1 details the number of screens completed by health service with the NEMICS region. Table 1 Number of screens per health service Health Service Total screens Austin Health 1056 Eastern Health 420 Mercy Hospital for Women 105 Northern Health 601 Total 2182 Page 8 of 32
Declined screens In total 2182 screens were offered across NEMICS health services during the audit period; of these, 134 were declined. Table 3 outlines the number of screens declined by each health service. Table 2 Screens declined Health service Screens declined Total screens % of screens declined by health service Austin Health 72 1056 7% Eastern Health 22 420 5% Mercy Hospital for Women 17 105 16% Northern Health 23 601 4% Total 134 2182 6% Age at time of screen Graph 1 and table 2 show the distribution of screens across age groups. A total 1714 patients or 84% of the sample were aged 50 and above. Age at time of screening across NEMICS health services broadly reflects Victorian cancer prevalence by age. Age at time of screen n = 2182 1% 36% 16% 48% Less than 50 years 50-69 years 70 or more years Not recorded Graph 1 Age group at time of screen Table 3 Age group at time of screen Age at time of screen % of screens Total screens Less than 50 years 16% 356 50-69 years 48% 1039 70 or more years 36% 776 Not recorded 1% 11 Total 100% 2182 Page 9 of 32
Graph 2 and table 4 show age groups by each tumour type. Due to variation in the number of screens completed across tumour types, it is difficult to draw direct comparisons. However the following graph provides a snapshot of the screening rate by age group for each tumour type. To provide ease of interpretation, those tumour types that had 5 or less screens have been removed. 350 300 250 200 150 100 50 0 Age at time of screen by tumour type n = 2182 Less than 50 years 50-69 years 70 or more years Not recorded Graph 2 Age at time of screen: tumour type Table 4 Age of time of screen: tumour type Tumour type Less than 50 years 50-69 years 70 or more years Not recorded Total Breast 150 325 133 5 314 Haematological 58 122 113 1 294 Colorectal 30 117 110 1 258 Lung 19 116 109 1 245 Genitourinary 11 97 98 1 207 Gynaecological 28 81 42 151 Upper GI 5 60 67 132 Head and Neck 10 40 38 88 CNS 22 26 11 59 Other 6 24 19 49 Skin 5 18 16 39 Not recorded 11 8 10 2 31 Lower GI 1 4 5 Hepatoma 2 1 3 Thyroids 1 2 3 Bone, soft tissue 1 1 2 Melanoma 1 1 2 Sarcoma 1 1 Total 356 1039 776 11 2182 Page 10 of 32
4.2. Supportive care screening across NEMICS Graph 3 and table 5 demonstrate rates of screening across NEMICS by tumour type. According to the Cancer in Victoria 2013 1 report, the most commonly diagnosed cancer types across Victoria are prostate, breast, bowel (colon and rectal), lung and melanoma. Across NEMICS, rates of screening by tumour type vary from rates of cancer diagnoses across the state; however the following needs to be considered when interpreting this data: Varied availability of specialist nursing staff to undertake the screening. Where there are specialist nursing staff in place, for example, Breast Care Nurses, screening rates tend to be higher Individual unit screening policies: tumour types receiving surgery only are less likely to be screened than those tumour types that receive chemotherapy, radiotherapy or admissions to the inpatient oncology ward. The length and intensity of treatment for different tumour types, including the number of different s that a person accesses to receive their cancer treatment. 30% 25% 20% 15% 10% 5% 0% Percentage of screens by tumour type n = 2182 Graph 3 Percentage of screens by tumour type 1 Thursfield V, et al. Cancer in Victoria: Statistics & trends 2013. Cancer Council Victoria, Melbourne 2014 Page 11 of 32
Table 5 Screening at Eastern Health by tumour type Tumour type Total screens Percentage of total screens Breast 613 28.1% Haematological 294 13.5% Colorectal 258 11.8% Lung 245 11.2% Genitourinary 207 9.5% Gynaecological 151 6.9% Upper GI 132 6.0% Head and Neck 88 4.0% CNS 59 2.7% Other 49 2.2% Skin 39 1.8% Not recorded 31 1.4% Lower GI 5 0.2% Hepatoma 3 0.1% Thyroid 3 0.1% Bone, soft tissue 2 0.1% Melanoma 2 0.1% Sarcoma 1 0.0% Total 2182 100.0% Page 12 of 32
Graph 4 and Table 6 show the percentage of screens undertaken across the region by. Screening occurs most commonly within day oncology units (30.2%) and specialist clinics (29.7%). Combining radiation therapy (public) and Radiation Oncology victory (ROV - private) brings the total of screens undertaken with radiation therapy services to 242 or 11.2% of the total number of screens. 35% 30% 25% 20% 15% 10% 5% 0% Percentage of screens by n = 2152 Graph 4 Percentage of screens by Table 6 Percentage of screens by Screening unit Total screens Percentage of total screens Day oncology 649 30.2% Specialist clinic (OP) 640 29.7% Oncology ward 342 15.9% Radiation therapy 207 9.6% Palliative care unit 168 7.8% Inpatient Medical Ward 63 2.9% ROV 35 1.6% Other 17 0.8% Surgical ward 16 0.7% Lymphoedema clinic 15 0.7% Total 2152 100.0% For a detailed analysis of screening by tumour type by health service, please refer to individual health service reports. Page 13 of 32
Screening clinician Graph 5 and table 7 show that within NEMICS the majority of screens are completed by oncology and specialist nursing staff. Allied Health staff include: Specialist nurse staff include: social work and other allied health disciplines breast care nurses, urology nurses, continence nurses, stomal therapists and nurse practitioner candidate. 2.0% 6.3% 2.2% 7.8% 11.8% 29.1% Screening clinician n = 2182 0.8% 40.5% Nurse Specialist nurse Allied health Unable to determine Not recorded Project officer Pastoral care Other Graph 5 Screening clinician Table 7 Screening clinician Screening clinician Total screens Percentage of total screens Nurse 883 40.5% Specialist nurse 634 29.1% Allied health 258 11.8% Unable to determine 171 7.8% Not recorded 137 6.3% Project officer 48 2.2% Pastoral care 43 2.0% Other 18 0.8% Total 2182 100.0% Page 14 of 32
Declined screens have been removed from analysis from this point forward. Therefore analysis will include 2048 screens. Distress Score There is a lack of clarity regarding the meaning of cut-off scores on the Distress Thermometer however higher scores are generally interpreted as suggestive of higher levels of distress. Patients reported a range of distress scores: 46.4% reported a distress score of less than 4 35.6% reported distress of between 4 and 8 13.5% reported distress of 8 or more. 4.5% of screens did not record a distress score. These screens have been included in this analysis as they have recorded problems on the problem checklist. Distress score category n = 2048 4.5% 13.5% Less than 4 46.4% Between 4 and 8 8 or more 35.6% Missing Graph 6 Distress score: percentage of total screens Table 8 Distress score: percentage of total screens Distress score category Number of screens Percentage of screens Less than 4 951 46.4% Between 4 and 8 729 35.6% 8 or more 276 13.5% Missing 92 4.5% Total 2048 100.0% Page 15 of 32
Graph 7 and table 9 show reported distress score patterns for tumour streams. Tumour streams where 7 or less screens were audited have been removed from the graph for east of interpretation. Although only 36 screens were audited, it would appear that people with skin cancer are less distressed with a higher proportion recording a distress score of less than four. This is followed by people with haematological cancers. 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Distress score category by tumour type Missing 8 or more Between 4 and 8 Less than 4 Graph 7 Percentage of distress score category by tumour type Table 9 Percentage of distress score category by tumour type Tumour type Less than 4 Between 4 8 or more Missing Grand Total and 8 Breast 238 236 108 18 600 Colorectal 119 86 29 16 250 Genitourinary 92 72 23 12 199 Haematological 116 56 15 7 194 Lung 85 69 29 1 184 Gynaecological 71 42 17 7 137 Upper GI 59 48 12 9 128 Head and Neck 37 34 13 1 85 Haematology 29 17 12 6 64 CNS 28 23 2 3 56 Other 20 20 6 2 48 Lung 21 14 5 5 45 Skin 26 5 4 1 36 Not recorded 2 2 3 7 Lower GI 2 1 1 4 Hepatoma 2 1 3 Thyroid 2 1 3 Bone, soft tissue 1 1 2 Melanoma 1 1 2 Sarcoma 1 1 Total 951 729 276 92 2048 Page 16 of 32
Graph 8 and table 10 show distress scores recorded by s. People with cancer are identifying greater distress if screened while on the palliative care unit, attending specialist clinics, and while on the inpatients medical ward or oncology ward. This is followed by the day oncology unit and radiation therapy. 400 350 300 250 200 150 100 50 0 Number of screens by distress score category and Less than 4 Between 4 and 8 8 or more Missing Graph 8 Number of screens by distress score category and Table 10 Number of screens by distress score category and Screening unit Less than 4 Between 4 8 or more Missing Grand Total and 8 Day oncology 339 188 65 38 630 Specialist clinic (OP) 243 261 99 21 624 Oncology ward 128 97 40 11 276 Radiation therapy 125 61 16 3 205 Palliative care unit 55 70 33 7 165 Inpatient Medical Ward 25 24 9 3 61 ROV 12 9 10 3 34 Other 8 5 1 3 17 Missing 8 4 1 2 15 Surgical ward 4 8 1 1 14 Lymphoedema clinic 4 2 1 7 Total 951 729 276 92 2048 Distress is generally considered to be high if a person reports a score of 4 or more. The following shows the proportion of distress scores for the highest s. Half or more of the people screened in specialist clinic, or while an inpatient on the oncology ward or palliative care unit are reporting a score of 4 or more Table 11 Percentage of distress score by Screening unit Less than 4 4 or more Missing Grand Total Day oncology 53.9% 40.1% 6% 100% Specialist clinic (OP) 39.0% 56.7% 3.3% 100% Oncology ward 46.3% 49.7% 40.% 100% Radiation therapy 61.0% 37.6% 1.4% 100% Palliative care unit 33.3% 62.5% 4.2% 100% Page 17 of 32
4.3. Problems identified Analysis of the problems identified on the problem checklist does not include comparison with the distress score identified as this relates to a global distress level rather than to individual problems identified by the patient on the problem checklist. Of the 2048 supportive care screens that completed screening, 2043 screens completed the problem checklist. There were 13843 problems identified across all problem checklist domains. Analysis of problem checklist data found the following: A mean of 6.78 problems A median of 6 problems A mode of 0 problems A range of 0 to 30 problems A standard deviation of 5.14 Table 8 lists the problems identified by domain. The percentage of problems identified by domain and by the number of screens is also shown. Table 12 All problems identified by domain NEMICS Total ticks % of domain % of screens Number of screens 2043 PRACTICAL 706 Child care 30 4.2% 1.5% Housing 65 9.2% 3.2% Insurance / financial 207 29.3% 10.1% Transportation 221 31.3% 10.8% Work / school 116 16.4% 5.7% Treatment decisions 67 9.5% 3.3% FAMILY 406 Dealing with children 127 31.3% 6.2% Dealing with partner 139 34.2% 6.8% Ability to have children 24 5.9% 1.2% Family health issues 116 28.6% 5.7% EMOTIONAL 4211 Depression 462 11.0% 22.6% Fears 639 15.2% 31.3% Nervousness 805 19.1% 39.4% Sadness 772 18.3% 37.8% Worry 1049 24.9% 51.3% Loss of interest in usual activities 484 11.5% 23.7% PHYSICAL 8475 Appearance 266 3.1% 13.0% Bathing / dressing 280 3.3% 13.7% Breathing 410 4.8% 20.1% Changes in urination 316 3.7% 15.5% Constipation 478 5.6% 23.4% Diarrhoea 245 2.9% 12.0% Eating 523 6.2% 25.6% Fatigue 1050 12.4% 51.4% Feeling swollen 342 4.0% 16.7% Fevers 141 1.7% 6.9% Getting around 442 5.2% 21.6% Indigestion 264 3.1% 12.9% Memory / concentration 504 5.9% 24.7% Mouth sores 198 2.3% 9.7% Page 18 of 32
NEMICS Total ticks % of domain % of screens Nausea 365 4.3% 17.9% Nose dry / congested 241 2.8% 11.8% Pain 748 8.8% 36.6% Sexual 93 1.1% 4.6% Skin dry / itchy 477 5.6% 23.3% Sleep 755 8.9% 37.0% Substance abuse 2 0.0% 0.1% Tingling in hand / feet 366 4.3% 17.9% SPIRITUAL 45 Spiritual concerns 45 100.0% 2.2% Total Yes 13843 Practical domain: Of the 13843 ticks recorded in all domains of the problem checklist, 706 or 5.1% were recorded in the practical domain. There are six problems included in this domain. Overall the greatest proportion of responses related to insurance/financial and transportation. Family domain: Of the 13843 ticks recorded in all domains of the problem checklist, 406 or 3.0% were recorded in the family domain. There are 4 problems included within this domain. Overall the greatest proportion of responses related to dealing with partner, dealing with children and family health issues. Emotional domain: Of the 13843 ticks recorded in all domains of the problem checklist, 4211 or 30.4% of all ticks were recorded in the emotional domain. There are 6 problems included in this domain with each screen recording at least 2 problems in this domain. Overall the greatest proportion of responses related to: worry, nervousness, sadness, and fears. Physical domain: Of the 13843 ticks recorded in all domains of the problem checklist, 8475 or 61.2% of all ticks were recorded in the physical domain. There are 22 problems included in this domain with each screen recording at least 4.1 problems within this domain. Overall the greatest proportion of responses related to: fatigue, sleep, and pain. Page 19 of 32
Irrespective of domain, graph 9 demonstrates the problems identified within the problem checklist from those identified most often to least often. People are identifying a range of problems regardless of tumour type following their cancer diagnosis (data taken from table 12). 60% NEMICS region problems identified: highest to lowest n = 2043 Percentage of screens 50% 40% 30% 20% 10% 0% Fatigue Worry Nervousness Sadness Sleep Pain Fears Eating Memory / concentration Loss of interest in usual activities Constipation Skin dry / itchy Depression Getting around Breathing Tingling in hand / feet Nausea Feeling swollen Changes in urination Bathing / dressing Appearance Indigestion Diarrhoea Nose dry / congested Transportation Insurance / financial Mouth sores Fevers Dealing with partner Dealing with children Work / school Family health issues Sexual Treatment decisions Housing Spiritual concerns Child care Ability to have children Substance abuse Graph 9 All problems identified: highest to lowest Practical domain Family domain Emotional domain Physical domain Spiritual domain Page 20 of 32
Table 13 shows the 15 most commonly identified problems (across all domains). These were identified by at least 1 in 5 people, with fatigue and worry identified by around half the people who completed the problem checklist. All of 15 problems were from the emotional and physical domains. Table 13 Problems identified: highest to lowest (1 in 5 people identify problem) Number of screens % of screens Fatigue 51.4% Worry 51.3% Nervousness 39.4% Sadness 37.8% Sleep 37.0% Pain 36.6% Fears 31.3% Eating 25.6% Memory / concentration 24.7% Loss of interest in usual activities 23.7% Constipation 23.4% Skin dry / itchy 23.3% Depression 22.6% Getting around 21.6% Breathing 20.1% Tables 14 to 28 break down the most commonly identified problems by. There is potential for s in the NEMICS region to use this information to plan interventions, services, information and resources to address commonly identified problems. Investigating the causes for these problems may assist in designing implementing strategies. Identification of a problem on the checklist does not indicate whether the problem is already being managed, rather that the problem exists. Table 14 Problems identified by : fatigue Screening unit Number of ticks Number of screens by % of screens by Day oncology 347 630 55.1% Specialist clinic (OP) 277 624 44.4% Oncology ward 157 276 56.9% Radiation therapy 78 205 38.0% Palliative care unit 128 165 77.6% Inpatient Medical Ward 28 61 45.9% ROV 18 34 52.9% Other 6 17 35.3% Not recorded 5 15 33.3% Surgical ward 4 14 28.6% Lymphoedema clinic 4 7 57.1% Total 1052 2048 Page 21 of 32
Table 15 Problems identified by : worry Screening unit Number of ticks Number of screens by % of screens by Day oncology 292 630 46.3% Specialist clinic (OP) 367 624 58.8% Oncology ward 131 276 47.5% Radiation therapy 93 205 45.4% Palliative care unit 98 165 59.4% Inpatient Medical Ward 37 61 60.7% ROV 15 34 44.1% Other 4 17 23.5% Not recorded 1 15 6.7% Surgical ward 8 14 57.1% Lymphoedema clinic 7 7 100.0% Total 1053 2048 Table 16 Problems identified by : Nervousness Screening unit Number of ticks Number of screens by % of screens by Day oncology 250 630 39.7% Specialist clinic (OP) 284 624 45.5% Oncology ward 90 276 32.6% Radiation therapy 71 205 34.6% Palliative care unit 60 165 36.4% Inpatient Medical Ward 25 61 41.0% ROV 10 34 29.4% Other 4 17 23.5% Not recorded 2 15 13.3% Surgical ward 6 14 42.9% Lymphoedema clinic 5 7 71.4% Total 807 2048 Table 17 Problems identified by : Sadness Screening unit Number of ticks Number of screens by % of screens by Day oncology 213 630 33.8% Specialist clinic (OP) 254 624 40.7% Oncology ward 108 276 39.1% Radiation therapy 52 205 25.4% Palliative care unit 100 165 60.6% Inpatient Medical Ward 25 61 41.0% ROV 9 34 26.5% Other 3 17 17.6% Not recorded 2 15 13.3% Surgical ward 4 14 28.6% Lymphoedema clinic 4 7 57.1% Total 774 2048 Page 22 of 32
Table 18 Problems identified by : Sleep Screening unit Number of ticks Number of screens by % of screens by Day oncology 241 630 38.3% Specialist clinic (OP) 226 624 36.2% Oncology ward 113 276 40.9% Radiation therapy 66 205 32.2% Palliative care unit 57 165 34.5% Inpatient Medical Ward 24 61 39.3% ROV 10 34 29.4% Other 6 17 35.3% Not recorded 5 15 33.3% Surgical ward 6 14 42.9% Lymphoedema clinic 3 7 42.9% Total 757 2048 Table 19 Problems identified by : Pain Screening unit Number of ticks Number of screens by % of screens by Day oncology 209 630 33.2% Specialist clinic (OP) 195 624 31.3% Oncology ward 112 276 40.6% Radiation therapy 73 205 35.6% Palliative care unit 106 165 64.2% Inpatient Medical Ward 28 61 45.9% ROV 10 34 29.4% Other 6 17 35.3% Not recorded 5 15 33.3% Surgical ward 5 14 35.7% Lymphoedema clinic 1 7 14.3% Total 750 2048 Table 20 Problems identified by : Fears Screening unit Number of ticks Number of screens by % of screens by Day oncology 174 630 27.6% Specialist clinic (OP) 239 624 38.3% Oncology ward 77 276 27.9% Radiation therapy 49 205 23.9% Palliative care unit 62 165 37.6% Inpatient Medical Ward 20 61 32.8% ROV 7 34 20.6% Other 2 17 11.8% Not recorded 1 15 6.7% Surgical ward 7 14 50.0% Lymphoedema clinic 4 7 57.1% Total 642 2048 Page 23 of 32
Table 21 Problems identified by : Eating Screening unit Number of ticks Number of screens by % of screens by Day oncology 150 630 23.8% Specialist clinic (OP) 96 624 15.4% Oncology ward 100 276 36.2% Radiation therapy 40 205 19.5% Palliative care unit 103 165 62.4% Inpatient Medical Ward 19 61 31.1% ROV 11 34 32.4% Other 2 17 11.8% Not recorded 4 15 26.7% Surgical ward 0 14 0.0% Lymphoedema clinic 0 7 0.0% Total 525 2048 Table 22 Problems identified by : Memory / concentration Screening unit Number of ticks Number of screens by % of screens by Day oncology 155 630 24.6% Specialist clinic (OP) 129 624 20.7% Oncology ward 84 276 30.4% Radiation therapy 38 205 18.5% Palliative care unit 74 165 44.8% Inpatient Medical Ward 10 61 16.4% ROV 2 34 5.9% Other 5 17 29.4% Not recorded 2 15 13.3% Surgical ward 2 14 14.3% Lymphoedema clinic 3 7 42.9% Total 504 2048 Table 23 Problems identified by : Loss of interest in usual activities Screening unit Number of ticks Number of screens by % of screens by Day oncology 144 630 22.9% Specialist clinic (OP) 118 624 18.9% Oncology ward 77 276 27.9% Radiation therapy 34 205 16.6% Palliative care unit 80 165 48.5% Inpatient Medical Ward 16 61 26.2% ROV 9 34 26.5% Other 3 17 17.6% Not recorded 2 15 13.3% Surgical ward 1 14 7.1% Lymphoedema clinic 2 7 28.6% Total 486 2048 Page 24 of 32
Table 24 Problems identified by : Constipation Screening unit Number of ticks Number of screens by % of screens by screening unit Day oncology 146 630 23.2% Specialist clinic (OP) 105 624 16.8% Oncology ward 75 276 27.2% Radiation therapy 43 205 21.0% Palliative care unit 86 165 52.1% Inpatient Medical Ward 11 61 18.0% ROV 7 34 20.6% Other 4 17 23.5% Not recorded 1 15 6.7% Surgical ward 2 14 14.3% Lymphoedema clinic 0 7 0.0% Total 480 2048 Table 25 Problems identified by : Skin dry / itchy Screening unit Number of ticks Number of screens by % of screens by screening unit Day oncology 155 630 24.6% Specialist clinic (OP) 123 624 19.7% Oncology ward 73 276 26.4% Radiation therapy 47 205 22.9% Palliative care unit 55 165 33.3% Inpatient Medical Ward 9 61 14.8% ROV 5 34 14.7% Other 4 17 23.5% Not recorded 4 15 26.7% Surgical ward 1 14 7.1% Lymphoedema clinic 1 7 14.3% Total 477 2048 Table 26 Problems identified by : Depression Screening unit Number of ticks Number of screens by % of screens by screening unit Day oncology 130 630 20.6% Specialist clinic (OP) 149 624 23.9% Oncology ward 58 276 21.0% Radiation therapy 36 205 17.6% Palliative care unit 56 165 33.9% Inpatient Medical Ward 15 61 24.6% ROV 11 34 32.4% Other 1 17 5.9% Not recorded 2 15 13.3% Surgical ward 2 14 14.3% Lymphoedema clinic 3 7 42.9% Total 463 2048 Note: self-reported depression does not necessarily indicate clinical depression. The NCCN Distress Thermometer and Problem Checklist is not an assessment for depression. Page 25 of 32
Table 27 Problems identified by : Getting around Screening unit Number of ticks Number of screens by % of screens by Day oncology 97 630 15.4% Specialist clinic (OP) 72 624 11.5% Oncology ward 86 276 31.2% Radiation therapy 42 205 20.5% Palliative care unit 119 165 72.1% Inpatient Medical Ward 12 61 19.7% ROV 4 34 11.8% Other 3 17 17.6% Not recorded 5 15 33.3% Surgical ward 2 14 14.3% Lymphoedema clinic 1 7 14.3% Total 443 2048 Table 28 Problems identified by : Breathing Screening unit Number of ticks Number of screens by % of screens by screening unit Day oncology 111 630 17.6% Specialist clinic (OP) 79 624 12.7% Oncology ward 78 276 28.3% Radiation therapy 38 205 18.5% Palliative care unit 80 165 48.5% Inpatient Medical Ward 7 61 11.5% ROV 8 34 23.5% Other 4 17 23.5% Not recorded 3 15 20.0% Surgical ward 2 14 14.3% Lymphoedema clinic 1 7 14.3% Total 411 2048 Page 26 of 32
5. Screening Outcomes After patients complete the screening tool, a conversation with a health professional assists to clarify the patient s perception of identified problems and address needs through information provision, triage and referral. This conversation is a key component of the screening process recommended by the Victorian Department of Health and Human Services. The following data provides an insight into the outcomes of this discussion within the NEMICS region. Northern Health is excluded from this analysis as they did not collect this data. 5.1. Referrals Referrals listed here are first tier referrals as a result of the supportive care screen, additional referrals made following assessment by the clinician/service referred to were not recorded. Further more, only referral information recorded on the SC medical record form was collected; referrals made but not recorded in this form were also not included. Table 29 provides details of referral data collected. Of the 1242 referrals that were recorded as offered, 855 (69%) were made. Table 29 Referral status for NEMICS Referral status Number of referrals Not specified 6 Offered and made 855 Offered but declined 306 Offered, no status info 69 Other 6 Total 1242 Page 27 of 32
Table 30 provides details of the referrals that were offered and made. The majority of referrals (96.4%) were made to services provided by NEMICS health services. Of these, social work (24.2%) and dietetics (15.7%) were most referred to. Only 24 of the 855 (2.8%) referrals made were for community services. Data was not collected on why referrals were made; however given the high number of screens identifying emotional domain problems, the higher number of referrals to social work, psychology and pastoral care work, (320 referrals or 44%) would be expected. In relation to identified physical domain problems, there were 376 referrals or 13.6% made to dietetics, GP/doctor, physiotherapy, occupational therapy and nursing. Table 30 Referrals made: most often to least often Health service Community Unspecified Grand Total Social work 207 207 Dietetics 135 135 GP/ doctor 79 4 83 Other 77 4 81 Physiotherapy 73 73 Psychology 71 1 72 Occupational Therapy 45 45 Nursing 44 44 Pastoral Care 42 42 Speech pathology 16 16 Look Good Feel Better Program 10 1 11 Palliative Care 8 3 11 Counselling 3 4 1 8 Cancer Council Victoria 5 5 Brain Tumour Support Officer 4 4 Massage therapist 3 3 Stomal Therapy 3 3 Wellness Program 3 3 Cancer foundation / organisation 2 2 Sexual Health 2 2 Support Group 1 1 2 Cancer Care Nurse (eg breast care nurse) 1 1 Council Services 1 1 Lymphoedema clinic 1 1 Total 828 24 3 855 Page 28 of 32
Table 31 provides details of referrals that were offered and declined. Of referrals offered but declined, over half (54%) were to services such as social work, psychology, pastoral care and counselling. Reasons for declining these referrals were not recorded so further investigation would be required to understand what variables impact acceptance of referrals to these services. In addition to relatively low rates of referrals offered to occupational therapy, physiotherapy and dietetics, some tendency to decline referrals to these services is also noted. At present there is no readily available data source to aid understanding of what screening clinicians tell patients about services/evidence-based interventions to address their identified problems. Table 31 Referrals offered but declined Health service Community Unspecified Grand Total Social work 88 88 Psychology 42 2 8 52 Other 28 1 5 34 Pastoral Care 24 24 Counselling 11 5 7 23 Dietitian 17 17 Occupational Therapy 15 15 Physiotherapy 12 12 Unspecified 1 8 9 Look Good Feel Better Program 6 1 7 Cancer Council Victoria 5 5 Nursing 4 1 5 GP/ doctor 3 1 4 Council Services 1 1 2 Massage therapist 2 2 Veteran Affairs 2 2 Brain Tumour Support Officer 1 1 Cancer Care Nurse (eg breast care nurse) 1 1 Palliative Care 1 1 Psychiatrist 1 1 Speech pathology 1 1 Total 258 18 30 306 Page 29 of 32
6. Discussion 6.1. Methodology Across NEMICS health services data collection varied according to available systems and resources in place. This variation resulted in differences in the number of screens audited at each site. There were two services that included all screens, Northern Health and Mercy Hospital for Women. Therefore comparison of audit findings cannot be made between services and the number of screens audited does not reflect the total number of screens completed across the region. 6.2. Overview of results Population: Age at which screening occurred at across NEMICS health services broadly reflects the age at which cancer is diagnosed across the state. The audit provided a picture of where screening occurs within NEMICS health services and the tumour types screened most commonly. The audit identified high incidence tumour types that are under screened due to system and resource issues. The audit identified under screening of tumour types where supportive care needs are usually high, again due to system and resource issues. Distress score: Overall, recorded distress scores followed the expected pattern with most people identifying a score of less than 4, fewer people identifying a score of between 4 and 8 and fewer still identifying a score of 8 or more. This pattern was consistent across tumour type, screening units and health services. Overall higher distress scores (a score of 4 or above) were recorded in the palliative care unit (62.5%), specialist clinics (56.7%), on the inpatient oncology ward (49.7%), in day oncology (40.1%) and in radiation therapy (37.6%). Knowledge that patients attending these services may experience greater distress could assist staff and services to monitor patients and provide interventions or self -management support earlier to try to alleviate distress where possible. Problem checklist: This study demonstrated that there are many (13843) problems identified by cancer patients at NEMICS health services. Some problems such as fatigue and worry were identified in over 50% of screens. Individual variability in problems identified within tumour types reinforces the value of using a problem checklist to assist patients to actively identify their individual needs. Worry, nervousness, sadness, and fears were the most commonly identified emotional domain problems. Increasing awareness of the high prevalence of these problems and implementing strategies early to assist people to manage these could reduce the impact of these problems over the long term. Fatigue, sleep and pain remain the most commonly identified physical domain problems. This has been a consistent finding throughout SC screening implementation across tumour types, s and health services. Problems with fatigue and sleep may be addressed in group sessions and through referral to allied health professionals working within community health/rehabilitation centres who specialise in these areas. Opportunities and collaborations should be investigated to support greater understanding of community-based services and strengthened linkages between services. NEMICS is currently undertaking work in this area. Page 30 of 32
The Problem Checklist assists people to actively identify their specific problems from a list of 39 across 5 domains. Education of individuals that problems are common and help is available is an additional benefit of the Problem Checklist. In keeping with DHHS policy we need to ensure that after a patient completed a supportive care screen, a discussion with a skilled health professional takes place and actions/referrals are agreed upon and completed. Screening outcomes: At present screening outcomes are recorded on the supportive care screening medical record form and the quality of data collected depends on the accuracy of what is recorded. In addition the medical recorded was not interrogated beyond the SC medical record form, therefore it is likely referral is under reported in the audit. The number of referrals made to address problems did not necessarily reflect the number of times a problem was identified. Due to limitations in the collection of referral data, caution is required in interpreting this information however understanding when, where and why a patient is referred will assist health services to better address patient needs. Of the 1242 referrals offered to address identified problems, 855 were made. The importance of the conversation that accompanies screening cannot be underestimated in assisting the patient to determine how best to address their needs. It is difficult to evaluate whether the type and amount of information and referrals offered are appropriate from the information recorded by clinicians. Further work is required to investigate this issue. Clinician knowledge of psychosocial services (health service & community), referral pathways, and the availability of acute and community allied health and psychosocial clinicians to refer to may impact on referrals offered. Understanding the barriers to referral (internal and external) may assist health services to better support their clinicians to address their patients self reported problems. 7. Recommendations Methodology: This audit provides a snapshot of the supportive care needs a sample of cancer patients at NEMICS health services. To provide an opportunity to evaluate strengths and differences between health services, using a standard data collection methodology is recommended for any future audits. Prior to any future audits, a review of the data collection tools is also recommended, particularly in relation to the information collected on action and referrals undertaken following the screen. Distress score: Further investigation into causes of distress to provide guidance for strategies to support patients during this time is required. This audit has identified different rates of self reported distress according to tumour type and the unit and health service in which the screening occurs. Due to the multi-factorial causes of distress, this may be an opportunity to engage with consumers using focus groups / co-design methodologies and other consumer collaborations to target particular time points in their cancer diagnosis and treatment to better support people at critical points. Page 31 of 32
Problem Checklist: This is the first time an audit has been undertaken to identify the supportive care needs of a sample of the NEMICS region cancer population. It provides a unique opportunity to use these findings and to collaborate with consumers to identify the issues patients are experiencing by tumour type and by screening location. This would provide an opportunity to take a regional approach, where appropriate, to develop strategies to address commonly reported needs and gaps in service. This audit identified the most commonly recorded problems across all domains in the Problem Checklist. Problems within the emotional and physical domain were identified most often. In addition, of patients attending the palliative care unit, lymphoedema clinic, oncology ward and day oncology, 50% or more report fatigue as a problem. Consideration could be given to increasing access to evidence-based interventions to assist patients to manage fatigue earlier in their care. Patients attending the inpatient medical ward, palliative care unit, specialist clinic and surgical ward identified worry in over 50% of screens. Awareness by staff of this issue may assist in using appropriate communication strategies, checking in with patients regarding their emotional responses and referral to psychological services. Screening outcomes: Further work is required to determine the best method of capturing more detailed triage and referral data. There is an opportunity to better understand the relationship between what occurs during the discussion following completion of the SC screen and the actions and referrals taken. Understanding these relationships may assist in planning services to address supportive care needs and to build relationships with cancer NGO s and community services to best support patient needs. This audit focused only on information recorded on the supportive care screening tool medical record form. To capture and understand second tier referrals a more detailed medical record audit is required. Further research into the local patient experience of screening to determine whether the subsequent discussion, information provision and referrals made met individual patient needs is recommended. Page 32 of 32