The Scottish School of Primary Care Cancer and Primary Care: Current Research, Future Practice

Transcription

1 The Scottish School of Primary Care Cancer and Primary Care: Current Research, Future Practice Wednesday 28 November 2001 Royal Pharmaceutical Society of Great Britain 36 York Place Edinburgh

2 Contents Welcome 3 Programme of Events 4 Abstracts for Early Diagnosis and Screening 5 Abstracts for Managing Cancer developing integrated care 8 Abstracts for Cancer the wider policy context 12 Abstracts for Poster Presentations 13 List of Attendees 43

3 Welcome to the first Cancer and Primary Care: Current Research, Future Practice Conference. The conference aims to showcase existing research projects and stimulate further research in cancer in primary care across the healthcare professions in Scotland. The day has been organised around 3 broad themes: Early diagnosis and screening Managing cancer The wider policy context You will hear presentations from a variety of perspectives and healthcare professionals including public health and secondary care. In addition, there is a lunchtime session devoted to poster presentations in the main lecture hall. The conference is being organised by the Scottish School of Primary Care as part of its developing programme of research in cancer care under the direction of a Scientific Panel. Members of the Scientific Panel are Dr Neil Campbell, Dr Una MacLeod and Professor David Weller. I would like to thank all our speakers and the Scientific Panel for making this day possible and hope that you enjoy this conference. Dr Sally Wyke

4 Programme of Events 9.30 Coffee/Tea and Registration Welcome Sally Wyke, Foundation Director, Scottish School of Primary Care Early Diagnosis and Screening. Chair: Lewis Ritchie, Dept. of General Practice, University of Aberdeen The Patients Perspective: Research Challenges for Primary Care, Clare Wilkinson, Dept. of General Practice, University of Wales College of Medicine Cancer Screening in Primary Care important issues for the next five years David Weller, University of Edinburgh Integrated Care for Cancer the potential of routine data for research and service development, Frank Sullivan, University of Dundee and Matt Sutton, University of Glasgow BREAK FOR LUNCH Poster viewing and brief presentations Managing Cancer developing integrated care. Chair: Graham Watt, Dept. of General Practice, University of Glasgow 1.00 Improving collaboration between primary and secondary care, Nora Kearney, School of Nursing and Midwifery, University of Glasgow 1.20 Managing cancer deprivation, co-morbidity and primary care, Una Macleod, Lecturer, University of Glasgow 1.40 Managing cancer rural factors Neil Campbell, Cancer Research Campaign Primary Care Oncology Fellow, University of Aberdeen 2.00 Providing optimum primary care for people with lung cancer: patients and carers views. Marilyn Kendall, University of Edinburgh 2.20 COFFEE/TEA BREAK Cancer the wider policy context. Chair: Nora Kearney, School of Nursing and Midwifery, University of Glasgow 2.45 The Cancer Plan integrating primary and secondary care Jim Cassidy, Professor of Oncology, University of Aberdeen 3.15 Primary care/public health and cancer, Phil Hanlon, Director, Institute of Public Health in Scotland 3.45 Summary of the day where to from here, Sally Wyke, Scottish School of Primary Care 4.00 close

5 Abstracts for Early Diagnosis and Screening Chair: Lewis Ritchie, Dept of General Practice, University of Aberdeen Title Author Cancer Screening in Primary Care important issues for the next five years David Weller, University of Edinburgh Screening is one of range of activities in which primary care has a lead role in reducing cancer deaths. The primary care team is involved at all levels of screening, including recruitment, co-ordination and followup. This paper will review the role of primary care in cancer screening, with a focus on screening for colorectal cancer. The Colorectal Cancer Screening Pilot began in England and Scotland in February Both pilot sites are actively recruiting and screening participants. These pilots provide an opportunity to examine the feasibility of FOBT screening in the UK, now that the potential for reduction in mortality through this form of screening has been established through randomised controlled trials. Already the pilot sites are collecting important information on the feasibility of this form of screening, which should prove valuable if a national programme of screening is to be established. An evaluation, based at the University of Edinburgh, has been conducted in tandem with the screening pilots; it is multi-faceted, and includes measurement of key screening outputs, impact on primary care and other health services, and psychological sequelae. Key aspects of this establishment phase of the screening pilots and the evaluation will be presented. Interim results suggest that populationlevel FOBT screening may be feasible in the UK, with programme performance consistent with the randomised controlled trials. A brief overview of other cancer screening issues of current topical interest to primary care will be included in the paper.

6 Title Authors Integrated Care for Cancer the potential of routine data for research and service development Frank Sullivan, University of Dundee and Matt Sutton, University of Glasgow What is available nationally Data is collected nationally for cancer registration. The primary source of information on cancer registration is hospital records. Raw data files are used and probability matching is used to identify unique incident cases. Provisional cases are then validated against hospital medical records. Information on cancer care is also available from hospital discharges, outpatient attendances and general practice contacts for a sample of practices from the Continuous Morbidity Recording scheme. General Register Office death records can also be used to track changes in cancer mortality. These information sources can be used for Public Health surveillance and epidemiological studies, audit, cancer service planning and evaluation of the impact of interventions. While relatively little has been done with national cancer data from primary care, there is considerable potential for linking these datasets to investigate pathways of care for cancer. Systems of care for cancer could be investigated by linking the resources available to general practices, population characteristics, primary cancer care, the implications for secondary care and population health outcomes. Variations between practices and the social patterning of cancer care, in terms of deprivation and rurality, may be a fruitful line of enquiry. Patient specific data through record linkage For some epidemiological studies or health services research patient specific data may be required. Community Health Data are collected by the NHSiS routinely within the service for the benefit of patients, the benefit of the service itself and for medical research, facilitated where there is a culture of collaboration and information exchange between different sectors within the service. In Tayside, over ten years ago, following extensive negotiations, the necessary permissions were gained for access to various comprehensive patient-specific datasets i. These included dispensed prescribing data (data on prescriptions dispensed in Tayside from 1989 forwarded from the Pharmacy Practice Division of the NHS Common Services Agency), Scottish Morbidity Record databases from the Information and Services Division of the NHSiS ii (inpatient hospital admissions, maternity, neonatal and mental health admissions, Cancer Registration database), and databases of endoscopy and colonoscopy procedures, and results of biochemical tests in Tayside hospitals. All databases can be recordlinked via a 10-digit patient identifier, known as the Community Health Index (CHI) number, which is allocated to patients when they register with a General Practitioner in Tayside, and incorporates date of birth and sex. Tayside Health Board grants MEMO access to the

7 Community Health Master Patient Index to track the resident population as patients move in, out and within the area. To permit studies on cancer in the entire population of Scotland, all the Chief Area Medical Officers of Scotland have also granted permission to MEMO for access to the entire Scottish CHI databases. A Scottish framework to permit anonymised research and patient specific research with permission has been agreed iii. Other areas of Scotland are increasing their use of the CHI number which will soon permit more widespread use of the record linkage techniques used in MEMO. A 1.8M Centre for Health Informatics has been funded by a government Science Research Investment Fund with major contributions from the University of Dundee and Tayside Primary Care Trust. The Chief Scientist Office and the Scottish Higher Educational Funding Council have funded a platform bid to allow nationally available and person specific data to describe variations in levels of input, population characteristics and processes and outcomes in primary care iv. It will also inform the choice and design of further studies and provide a sampling frame for Scotlandwide studies. References 1 Evans JMM, McDevitt DG, MacDonald TM. The Tayside Medicines Monitoring Unit (MEMO): A record-linkage system for pharmacovigilance. Pharmaceut Med 1995; 9: Information and Statistics Division. ISD Scotland Guide: an A-Z of the work of the Information & Statistics Division. Edinburgh: Information & Statistics Division, Information and Services Division The Data Protection Act An action plan for the NHSiS. 1

8 Abstracts for Managing Cancer developing integrated care Chair: Graham Watt, Dept of General Practice, University of Glasgow Title Author Improving collaboration between primary and secondary care Nora Kearney Senior Lecturer in Cancer Nursing & Head of School, Nursing and Midwifery School, University of Glasgow Optimal cancer care requires a seamless health care service operating across the primary/secondary care interface. Such a service requires innovative and effective ways of working and providing information, incorporating specialist and generalist services, which traverse the traditional boundaries of primary and secondary care. The recognition of the importance of the Primary Care Team was highlighted in the Calman Hine report (1995) yet this vital component of effective cancer care does not always play an integral part in patient management. Whilst the reasons for this are multifactorial there are a number of areas where progress is being made to facilitate greater awareness of a team approach to cancer care. Through research, collaboration between primary and secondary care can be enhanced to ensure optimal patient outcomes.

9 Title Author Background Method Results Conclusions Managing Cancer deprivation, co-morbidity and primary care Una Macleod, Lecturer, University of Glasgow Department of General Practice, University of Glasgow, 4 Lancaster Crescent, Glasgow G12 0RR Tel: +44 (0) Fax: +44 (0) e: mail: u.macleod@clinmed.gla.ac.uk Deprived women have known poorer outcomes from breast cancer than affluent women. This study describes and compares the balance of care received by women with breast cancer living in affluent and deprived areas to determine whether different patterns of care differ may explain these poorer survival outcomes for deprived women. Case note review of the hospital and general practice records of women who were diagnosed with breast cancer in Greater Glasgow Health Board in 1992 and 1993, and who lived in Deprivation categories (Carstairs Index) 1,2 (least deprived, n = 157) and 6,7 (most deprived, n = 264) at time of diagnosis. Survivors were sent a postal questionnaire. Deprivation did not affect the pathological prognostic factors at time of presentation with primary breast cancer. However, more women from deprived areas presented with locally advanced or metastatic disease (15.4% v 6.4%, X 2 = 7.42, p = 0.006). The time from GP s letter to clinic visit was shorter in women from affluent areas (affluent: median 6 days, Inter Quartile Range 1 to 14; deprived: median 7 days, IQR 4 to 20, Z = -2.89, p = 0.004), as was time to surgery from clinic visit (affluent: median 15 days, IQR 9 to 24; deprived: median 17 days, IQR 11 to 28, Z = -2.10, p = 0.036). After diagnosis women in deprived areas consulted their GPs more frequently than women in affluent areas (consulting >12 times per year: 27.0% v 15.9% X 2 = 12.67, p = 0.027). Admissions to hospital for problems not related to breast cancer were more common in those living in deprived areas (X 2 = 11.82, p = 0.003). Women living in deprived areas stated greater anxiety regarding money (2.8% v 12.2%, p = 0.02), other health problems (8.2% v 22.1%, p = 0.02) and about family problems (6.9% v 17.5%, p = 0.049). In this study, women living in deprived areas were more likely to present with large, advanced cancers than women from affluent areas, to wait longer to be seen at the clinic and longer for surgery. After diagnosis, more women in deprived areas continued to consult in excess of once a month in primary care and were more frequently admitted to hospital with conditions other than breast cancer. This study emphasises the need to address the issue of deprivation in relation to the delivery of optimum care for women with breast cancer. The relevance of co-existing illness to diagnosis and management of cancer will be discussed.

10 Title Author Managing Cancer rural factors Neil C Campbell, CRC Primary Care Oncology Fellow, Department of General Practice and Primary Care, University of Aberdeen Patients with cancer who live in rural areas have many of the same views on services as urban patients. In a qualitative study, they wanted rapid access to specialist investigations and treatment, good and fast communication, and good collaboration between all doctors and nurses involved in their care. Differences between rural and urban patients related to travelling, which could cause considerable hardship, and expectations of health care, where rural patients appeared to be more self reliant and less tenacious in pursuing health care. The difference in expectations is in line with evidence on colorectal and lung cancer in north and northeast Scotland where rural patients were significantly more likely to present with advanced disease. For example, 28% of patients living in cities close to a cancer centre had ISS stage I or II lung cancer at diagnosis compared to 14% of those living in outlying areas. The respective proportions for Dukes A or B colorectal cancer were 52% and 39%. Rural residents did not have longer delays between referral and treatment - in fact, rural patients with colorectal cancer were treated 30% more quickly. Overall, modalities of treatment were similar in rural and urban patients with both cancers, although there was a significant trend for less use of radiotherapy among rural patients with colorectal cancer (odds ratio in the most rural group compared to the most urban was 0.39). Later stage disease at diagnosis can lead to poorer survival rates. In a recent analysis of cancer registrations in Scotland, more rural patients with breast, colorectal and stomach cancers were found to have died before their cancer was firmly diagnosed, and there was a general trend to poorer survival after diagnosis, significant for lung and prostate cancer. In conclusion, rural factors are important in managing cancer, particularly for primary care. Patients present with more advanced disease, have to contend with more travelling problems, and have poorer survival rates.

11 Title Authors Aim Methods Findings Providing optimum primary care for people with lung cancer: patients and carers views Dr. Marilyn Kendall & Dr. Scott Murray - Department of Community Health Sciences, General Practice, University of Edinburgh; Dr. Allison Worth - Department of Nursing Studies, University of Edinburgh; Dr. Kirsty Boyd - Palliative Care Service, Royal Infirmary of Edinburgh; Dr. Fred Benton - St. Columba s Hospice, Edinburgh The 2.5 year, qualitative study, from which this data is taken, aimed to compare the issues facing patients, and their families, with inoperable lung cancer, and those with end-stage cardiac failure. It aimed to construct a patient-and-carer centred account of their changing needs, and the extent to which these are met by existing services. The study took a prospective, longitudinal, and in-depth qualitative approach. Twenty patients with inoperable lung cancer, and twenty with end stage cardiac failure, were recruited to the study and semistructured interviews were conducted at regular intervals, for up to a year, with these patients, their carers, their GPs and other, key professional service providers. Bereavement interviews were also conducted with the carers, if appropriate. In total, over two hundred interviews were completed, and analysed using the Nvivo software package, and the techniques of narrative analysis. Two focus groups were also convened. Their members were drawn from a wide range of health and social care professionals, and included patients and carers. The discussion at these groups served to illuminate and refine the themes and issues emerging from the data. We will present selected findings, focusing on lung cancer patients and carers perceptions of services, and their experience of the health care system, based on both the interviews and the focus group discussions. In particular, we will discuss patients and carers experiences of receiving a diagnosis and prognosis, starting treatment, their information and support needs at this time, and the ways in which primary care practitioners manage these early stages. Conclusions The primary care team can be central to the experience of individuals with lung cancer, and their carers, from pre-diagnosis to death and bereavement. We will conclude with a brief discussion of the main issues and needs highlighted by this part of the study and some recommendations for action to address them, in order to provide optimum primary care for people in the early stages of lung cancer.

12 Abstracts for Cancer the wider policy context Chair: Nora Kearney, School of Nursing & Midwifery, University of Glasgow Title Author The Cancer Plan integrating primary and secondary care Jim Cassidy, Professor of Oncology, University of Aberdeen Patients expect to have all illnesses dealt with in a timely and efficient manner. As individuals they are quite rightly not so concerned with organisation of care (or funding) until they have the illness in question. Cancer is still a frightening diagnosis in most cases which is equated with death in the eyes of many lay people (and quite a few professionals!) Cancer diagnosis, staging and therapy is evolving extremely rapidly. This has been led by academic advances in understanding the biology of the disease. It is also very likely that we are just at the start of an explosion of new knowledge based on molecular phenotyping of cancers and individualised therapy. It is difficult enough to envisage how specialist secondary care facilities and practitioners are going to keep up with these developments. So how will this affect the link between primary and secondary care? This presentation will explore this topic in some detail and suggest strategy to maintain and enhance the links that already exist in Scotland.

13 Abstracts for Poster Presentations Title Authors Models of palliative care and service provision for rural communities in Scotland Rosemary Chesson + & Sally Lawton *,, Robert Gordon University + Health Services Research Group * School of Nursing Background Palliative care services have grown considerably in the last 20 years. Concomitantly the nature of provision has become increasingly diverse. However, an overall picture of palliative care services in rural Scotland is lacking, especially regarding how well rural dwellers needs are met. As part of a wider study we sought to provide some answers to the many unanswered questions concerning palliative care. Study Aims 1. To identify models of Scottish provision of cancer support and palliative care especially for people living in rural areas. 2. To determine key issues in service provision. Method a) Statutory and voluntary organisations were contacted to identify units offering cancer support and palliative care. b) A purposive sample was selected. c) Information was gathered from the internet and telephone interviews were conducted. Questions asked included those relating to availability and nature of services, user numbers and costs. d) All information obtained was tabulated and comparisons drawn. Main Findings Care services were offered by hospices, community hospitals, resource centres and support groups. The voluntary sector played an important role. Some facilities attempted to meet rural as well as urban needs. Only in a few instances was provision found across the cancer journey. Many units were highly dependent on voluntary contributions and short-term grants. Volunteers often were relied on for key tasks Conclusion Current provision appears barely able to cope with demand and seldom meets all needs. NHS and local authorities need to explore how best information can be exchanged with voluntary agencies and an integrated service provided. Acknowledgements This work was funded by Grampian Primary Care NHS Trust.

14 Title Authors The Information Seeking Behaviour And Psychosocial Support Needs Of Women With Breast Cancer Living In Affluent And Deprived Areas Iain W Robertson, Helen Skeoch, Richard Watson, & Angela Ford Background Concern has been expressed about the quality of the provision of outhours-care for advanced cancer patients, who require palliative care in the community (Barclay. Rogers. Todd. 1997). A major change in the delivery of out-of- hours care has recently taken place in many parts of the UK (Hallan.L.1997). There has been a shift in provision away from individual GP practices and deputising services, towards provision by GP co-operatives. In Glasgow this care is provided by a co-operative, Glasgow Emergency Medical Services, for the patients of 600 Glasgow General Practitioners. There has been no forum amongst local GPs, for the discussion of the issues surrounding this important aspect of care of advanced cancer patients, and this has to be addressed before any changes can be implemented. It was therefore propose to investigate the views of GEMS GPs on this subject. The information obtained could be used to implement changes locally to improve the quality of care. Objectives Design Setting To ascertain the views of general practitioner members of an out-ofhours co-operative, on the provision of out-of-hours palliative care in the community for terminally ill cancer patients. To examine their perceptions of the standard of care, identify specific problems and obtain their views on potential improvements in care. Postal questionnaire survey. The out-of-hours co-operative serving Glasgow. Participants 600 General Practitioner members of GEMS (Glasgow Emergency Medical Service). Results There was a 70% response rate. GPs provided out-of hours care for these patients in a variety of different ways. There was a high level of GP satisfaction with the service provided by GEMS, 94% of GPs using the service were satisfied or very satisfied. GP satisfaction while working for GEMS was also high at 83% and 82% of GPs were satisfied or very satisfied with the service to these patients overall. GPs reported a high level of personal satisfaction in providing care for terminally ill patients but also indicated that there was sometimes a personal cost in doing so. There were a significant number of problems identified, relating to patient admissions (particularly to hospice), communication, access to drugs, equipment, specialist advice and community nursing support. GPs were overwhelmingly in support of further training in palliative care, improvements in patient information transfer, protocols for care, better access to specialist advice and improved access to drugs and equipment. The majority of GPs did not support handing over care to a specialist team.

15 Conclusions GPs felt very positive about the current service they provided for terminally ill cancer patients out-of-hours, however they did identify a significant level of problems. Some of these problems could be improved by changes made by GPs themselves but other difficulties are out-with GP control. There was strong GP support for potential improvements in the service and these need to be taken forward with proper planning, audit and evaluation. Relevance to practice The information will be passed to GEMS and the local Macmillan facilitators and interested GPs with the intention of improving this type of patient care. Barclay S. Rogers M. Todd C Communication between GPs and co-operatives is poor for terminally ill patients. British Medical Journal 315: Hallam L Out of hours primary care. British Medical Journal 314: 157.

16 Title Authors The information seeking behaviour and psychosocial support needs of women with breast cancer living in affluent and deprived areas U Macleod 1, S Ross 1, L.Fallowfield 3, GCM Watt 1, 1 Dept of General Practice, University of Glasgow, University of Glasgow, 4 Lancaster Crescent, Glasgow, G12 0RR, 2 CRC Psychosocial Oncology Group, University College London Medical School, U.K. Introduction This questionnaire study is part of a larger study which describes and compares the balance of care received by women with breast cancer living in affluent and deprived areas to assess whether different patterns of care may explain the known poorer survival outcomes for deprived women. The purpose of the questionnaire was to explore how information seeking behaviour and psychological support may vary with deprivation. Method Results A postal questionnaire was sent to women who were diagnosed with breast cancer in Greater Glasgow Health Board in 1992 and 1993, and who lived in Deprivation categories (Carstairs Index) 1,2 (least deprived, n = 157) and 6,7 (most deprived, n = 264) at time of diagnosis. This survey included the SF36 questionnaire and questions about information seeking behaviour and psychosocial support following diagnosis. A statistically significant difference was demonstrated for each of the SF36 scales, with the exception of bodily pain, between women living in affluent and deprived areas in favour of those living in affluent areas. Women living in affluent areas were more likely to remember receiving information about breast cancer than women living in deprived areas from their hospital specialist (94.8% v 76.0%, p = ) or breast care nurse (70.1% v 40.0%, p = ). Very few women had received information from voluntary organisations. The organisation which was contacted for information most frequently was Breast Cancer Care; women living in affluent areas were more likely to have received information from them than women living in deprived areas (23.4% v 11.0%, p = 0.03). The most likely action of the respondents if they became anxious was to speak to their GP (70.8% of respondents from affluent areas, 72.4% of respondents from deprived areas, p = 0.25), contact hospital specialist (60.6% of respondents from affluent areas, 67.1% of respondents from deprived areas) or speak to family or friends (50.8% of respondents from affluent areas, 53.4% of respondents from deprived areas). Women living in deprived areas demonstrated greater anxiety regarding money (2.8% v 12.2%, p = 0.02), other health problems (8.2% v 22.1%, p = 0.02) and about family problems (6.9% v 17.5%, p = 0.049).

17 Conclusions Women living in deprived areas demonstrate greater psychosocial needs, but this study fails to show these needs being met. It is unclear whether these needs are due solely to breast cancer or whether contributed to by other stressors. It may be that deprived women ought to receive greater psychosocial support than more affluent women from health professionals and voluntary organisations.

18 Title Author The Process of Investigation for Prostate Cancer: Exploring patient s experiences leading up to diagnosis Maureen Fee, Macmillan Lead Cancer Nurse, Forth Valley Health Board Background The study aim was to explore men s experiences of the process of investigation leading up to their diagnosis of prostate cancer. Methods Results The approach taken was a qualitative study using semi-structured interviews with ten men diagnosed with prostate cancer in the last twelve months. Recruitment was through a prostate cancer clinic in a local District General Hospital. The results showed that men s experiences leading to their diagnosis were varied, complex and often prolonged. Most of the men were unfamiliar with the tests they had received and the implications of the tests in terms of further investigations and/or treatment. Most of the men were taken by surprise by the diagnosis. The experience of being active participants in deciding treatment options was viewed favourably by some and negatively by others. Respondents felt that men in general are reluctant to access services for potentially embarrassing conditions. However, the men interviewed felt prostate screening should be easily accessible. Conclusions The prolonged nature of the investigation process and referral pathways suggested a need for review of service provision and consensus on guidelines on what further research is needed into the information needs of the range of health care professionals involved to support them in managing the process which men are exposed to in the stages leading to a prostate cancer diagnosis and to inform patients appropriately. There is a need for further exploration into men s understanding of issues around screening and urinary signs and symptoms that might encourage them to approach health services.

19 Title A cross sectional survey to estimate the prevalence of family history of colorectal, breast and ovarian cancer in a general practice population Authors E. Wallace+, A. Hinds, H. Campbell, M Porteous, J. Horrobin, J. Wilson. +Edwin Wallace, Markinch Medical Centre, 19, High Street, Markinch, Glenrothes, FIFE, KY7 6ER. Tel. No or (Glenrothes LHCC). Fax number EdWallace@fife-pct.scot.nhs.uk Background Local Health Care Co-operatives have been charged with measuring health needs within their communities. Cancer remains one of the three health priorities of the National Health Service in Scotland (NHSiS). The effect of the publication of referral guidelines for patients with a family history of cancer by the Cancer Genetics Sub- Group of the Scottish Cancer Group on General Practice and the cancer genetics clinics was difficult to predict due to the lack of data on the prevalence of such a family history in the general practice population. Aims Methods To measure the prevalence of a significant family history of colorectal, breast and ovarian cancer by a postal survey of general practice patients aged from 30 to 65 years inclusive. A cancer family history questionnaire that had been developed and evaluated by a clinician at Addenbrookes Hospital NHS was used in this study. Patients were asked if they have any family members who have had colorectal, breast and ovarian cancer and the age at which these cancers were diagnosed. Those with a family member affected were asked to fill in a detailed family history. Findings Response rate 59%. A total of one thousand three hundred and ninety-six respondents reported a positive family history of cancer. Forty-five respondents reporting a positive family history of colorectal cancer met referral guidelines. Sixty-five of female respondents met the referral criteria for breast cancer. Twenty-six female respondents met the referral guidelines for ovarian cancer. Forty-one percent of the respondents reporting a positive family history of colorectal, breast or ovarian cancer had had concerns in the past regarding their own risk Fifteen percent of respondents who reported a positive family history of these cancers had discussed their concerns with their GP. Ten percent of those respondents reporting a positive family history of cancer had been referred. Two percent of those respondents reporting a positive family history of cancer had received genetic counselling concerning their risk of developing colorectal, breast or ovarian cancer. As a result of being interviewed by the genetics nurse, the risk of only 21 of the 305 respondents interviewed was altered. The risk of one or more of the three cancers was increased for only 16 of the respondents interviewed.

20 Relevance Patients with concerns about their family history of cancer can satisfactorily fill in a pedigree chart with no assistance. A minority of patients in a general practice population with a positive family history of cancer has received genetic counselling.

21 Title Authors Stage at diagnosis of colorectal and lung cancers Comparison of patients living near and far from cancer centres Neil C Campbell+, Alison M Elliott, Linda Sharp, Lewis D Ritchie, Jim Cassidy, Julian Little +Neil C Campbell, Department of General Practice and Primary Care, Foresterhill Health Centre, Westburn Road, Aberdeen, AB25 2AY. n.campbell@abdn.ac.uk Tel: Fax: Background We have found that, in Scotland, patients living in outlying areas have poorer survival from several common cancers. Comparing outlying patients (>38 km) with those living in cities (with cancer centres), odds ratios for death before diagnosis and hazard ratios for death after diagnosis were: 1.78 (95% CI ) and 1.11 (95% CI ) for colorectal cancer (( ) and 1.09 ( ) for lung cancer. Aims Methods Findings This study set out to investigate whether outlying patients have more advanced disease at diagnosis. Case notes of 1323 patients in north and northeast Scotland who were diagnosed with lung or colorectal cancer in 1995 or 1996 were reviewed. Stage at diagnosis was compared for patients living near and far from cancer centres. Modelling was conducted using logistic regression. Of patients with lung cancer, 42% (69/164) living 58 kms or more from a cancer centre had disseminated disease at diagnosis compared to 33% (71/215) living within 5 kms. For colorectal cancer the respective figures were 24% (38/161) and 16% (31/193). For both cancers combined, the adjusted odds ratio for disseminated disease at diagnosis in furthest group compared to the closest group was 1.59 (P = 0.037). Of 198 patients with non small cell lung cancer in the closest group, 56 (28%) had limited disease (stage I or II) at diagnosis compared to 23 of 165 (14%) of the furthest group (P=0.002). The respective figures for Dukes A and B colorectal cancer were 101 of 196 (52%) and 67 or 172 (39%) (P=0.025). Relevance for policy and practice Patients who live remote from cities and the associated cancer centres tend to have more advanced cancer at diagnosis, and this may explain their poorer chances of survival. There are similar reports in other countries. These findings may be related to patient or health service delays - qualitative research suggests that rural patients delay presentation and are less demanding of referral. Outlying patients require prompt referral and investigation if they are to benefit from increasingly specialist and centralised cancer services.

22 Title Author Baseline Audit Of Cancer Care In Primary Care In NE Scotland Dr Peter Kiehlmann Macmillan Lead Cancer GP, NESCCAG Sept 2001 Introduction The PHCT role in Cancer Management is likely to expand. LHCCs will have a key role in delivering this cancer strategy. (Action for Change) In 1999 a Macmillan Lead Cancer Team was appointed in NE Scotland. The NE Scotland Cancer Co-ordinating & Advisory Group (NESCCAG) was re-launched in 2000; as part of this process, a baseline audit of Cancer Care in Primary care was undertaken. Methods Results No questionnaires to assess Primary Care Cancer Care exist. A questionnaire was drawn up to assess important issues in Primary Care and sent to all practices in Grampian, Orkney & Shetland. A 73% response rate showed enthusiasm for cancer care. i) Primary Health Care Team (PHCT) Working PHCT meetings are widely held; not all have minutes/actions recorded. Topics discussed include Clinical, Palliative and Administrative. Significant Event Analysis is carried out in a minority of practices. District & Practice Nurses and Health Visitors are widely involved. Macmillan Nurses are much less involved, especially in City practices. ii) Information- sharing Cancer Registers are not easily maintained or widely used. Family History of Cancer is recorded, but not in a standard fashion. Many different methods are used to share information. PHCT access to GP records is variable; but improves using electronic records. Better access with electronic records is more marked in Grampian practices. iii) Audit, Education, Training & Research Audit is not widely or regularly carried out. Education & Training is carried out ad-hoc and more is welcomed. There are many GPs and Nurses with an interest in cancer care Research is rare in Primary Care.

23 iv) Primary-Secondary Care Interface The SIGN 31 Referral Dataset is regularly used by few practices. Practices are generally satisfied with most aspects of Secondary care; especially with Breast, Haematology and Lung Pathways. Colo-Rectal (CRC) Cancer Pathway causes concern. Information given by Secondary Care to patients, relatives and Primary Care also has room for improvement. Conclusions & Action Points In the care of Chronic Disease in Primary Care such as Diabetes or Heart Disease it has been shown that structured care can improve outcomes. While individual new cancers may not be common, there is a significant morbidity and workload for Primary Care Staff. Suggestions are put forward which could form a structured Pathway for Cancer Care in Primary Care. I.e. i) Primary Health Care Team (PHCT) Working / Informationsharing a. Family History of Cancer and new Cancer Diagnoses should be recorded in a standard fashion, to form a Cancer Register b. The Cancer Register could be used as a dynamic working tool in conjunction with a Cancer Checklist, with a keyworker bringing cases for regular review by the PCHT, ensuring all issues are covered. c. Significant Event Analysis could be carried out for New Cancer Diagnoses and Cancer Deaths giving multidisciplinary reflective practice. d. Different methods used to share information can be disseminated as examples of best practice. e. More PHCT access to GP records could be encouraged, especially of electronic records. ii) Audit, Education, Training & Research a. Audit could be encouraged in specific areas on a LHCC Regional basis. b. Education & Training practice, LHCC or Regional programmes could be developed, from Learning development plans. c. Research could be encouraged in Primary Care esp in Diagnosis. iii) Primary-Secondary Care Interface NESCCAG to consider a. Redesign of Care Pathways could improve some site-specific areas, notably b. Colo-Rectal, Upper GI and Skin cancers. c. Primary Care to be fully integrated into NESCCAG with wide, transparent,

24 d. inclusive and representative GP and Nurse input. A Primary Care Reference group, such as in the Clinical Standards Board, could be set up. e. Practices are generally satisfied with most aspects of Secondary care we could celebrate this and consider how this compares with other areas. ECCI could be used to improve:- a. Uptake of the SIGN 31 Referral Dataset. b. Time from GP Referral to Out-Patient Clinic & Diagnosis which could be recorded, audited and improved. c. Information given from Secondary Care to patients and Primary Care.

25 Title Authors WISECARE+: Supporting patients receiving chemotherapy N Kearney, Nursing and Midwifery School, University of Glasgow D Hoy, Dept of Nursing Studies, Glasgow Caledonian University M Miller, Nursing and Midwifery School, University of Glasgow Background Within oncology, patients are increasingly playing a participatory role their treatment and care. To do this effectively, patients require more information and this information should be from a reputable source. This is particularly important in relation to the administration of chemotherapy as patients increasingly receive their treatment on an out-patient basis or have shorter hospital stays. As a result, patients must often manage their treatment-related symptoms at home, making it imperative that they have the essential information, skills and support to conduct effective self-care without the direct supervision of a healthcare provider. WISECARE+ intends to respond to these changes in the organisation and provision of cancer care and provide relevant information to patients in the form of self-care guides and reputable website addresses. Aims Method To evaluate whether a systematic approach to information provision, underpinned by evidence-based practice and supported by appropriate information technology, has a positive impact on specific outcomes for patients receiving chemotherapy. Design: WISECARE+ is a multi-centre project that aims to compare the effects of self-care guidelines and evidence-based nursing practice on specific patient outcomes. WISECARE+ will focus on patients experiences of nausea, vomiting, fatigue and oral problems. Patients will be randomised to receive one of three processes of care: local care, local care and self-care guidelines or evidence-based care and self-care guidelines. Using tests of comparison, the effects of these processes of care on patient outcomes will be evaluated. Data collection: Patients will complete a 13-item questionnaire daily for 14 consecutive days following the start of each chemotherapy cycle. If the patient is discharged before the 14 th day, which is likely to be the case for the majority of patient, they will be given the remaining questionnaires to complete at home. The questionnaire will not only ask about their symptoms, but also ask them to indicate what, if any, self-care activities they have undertaken. A random sample of each patient group will also be asked to complete a short questionnaire about their experiences of care. Data management: Patients questionnaire results will be entered by nursing staff at the clinical sites into the WISETool, a mini-electronic patient record. This will give patients a graphical print-out of their symptom experiences and allow nursing staff and patients to evaluate the impact of specific interventions (nursing and self-care) on patient outcomes.

26 Research Outcomes: There are a number of anticipated outcomes from this project. i. Increased patient participation in self-care while at home ii. Increased patient empowerment in communicating with health professionals (both in primary care and hospital) iii. Improved provision of patient-friendly information (both paper and via the Internet)

27 Title Authors Primary Care Palliative Care - Pain Management Audit Duncan R, Sugden C, Oxenham D, Dunn R, Duncan E Lanarkshire Primary Care NHS Trust, Udston Hospital, Robert Duncan, PMA Project Manager, Lanarkshire Primary Care NHS Trust, Udston Hospital, Farm Road, Hamilton ML3 9LA robert.duncan@lanpct.scot.nhs.uk Phone No.: Fax: In 1999, a pilot study looking at Pain Management in Palliative Care, was initiated by the Lanarkshire Primary Care Audit Team. Community based Guidelines and an accompanying Audit Form, which would facilitate the monitoring of pain management in palliative care patients with advanced or metastatic cancer, were produced and issued to all Palliative Care team members. It was an inter-disciplinary study involving GPs, District Nurses, Specialist Nurses and any other members of the palliative care team. The aim was to provide the Primary Care palliative care team with practical guidance on pain management, via a local guideline, and to audit the efficacy of the guideline by use of a simple audit form. The initial pilot study ran for 6 months. A paper on the results of the pilot study has been written and submitted to the Journal of Palliative Medicine for publication. The audit form was designed to both encourage implementation of the Analgesic Stepladder and provide a record of pain management for independent audit. The forms are issued at the first home visit and left with the patient. FREEPOST envelopes are provided for the return of completed forms. The form uses the validated Support Team Assessment Schedule (STAS) to assess pain management. Pilot Study results indicated that overall management of pain was achieved in 64% of the pilot study population. It is stated that by using the WHO treatment strategy it is possible to achieve pain relief in 88% of patients. [1] The results were also measured against several of the standards adopted from the, CRAG funded, Scottish Pain Audit. Two standards in particular had unsatisfactory results. These were Standard 6 Rescue medication prescribing for breakthrough pain and Standard 11 - Routine prescribing of laxatives in conjunction with opioids. The project data set was used as the basis for the minimum core data set for SIGN Guideline 44 Control of Pain in Patients with Cancer. The project has now been incorporated as part of the Year 2, Lanarkshire Primary Care Clinical Governance Pack. We have now incorporated the lessons learned from the pilot study, along with relevant parts of SIGN Guideline 44, and our revised Guidelines and Audit Forms were issued Trust-wide in April 2001.

28 At present we have 315 patients registered in the study with 1805 episodes of pain management being recorded. It is our intention to reanalyse our findings in December 2001 and report on our results. [1] Zech DF, Grond S, Lynch J, Hertel D, Lehmann KA. Validation of World Health Organization Guidelines for cancer pain relief a 10 year prospective study. Pain 1995; 63:65-76.

29 Title Author Coping With Lung Cancer Rachel Unwin, Grampian Primary Care NHS Trust This study will form the basis of a two year Research Fellowship with Grampian Primary Care NHS Trust, which began in April Although the literature search is almost complete, ethical approval still has to be obtained. This abstract is being put forward, therefore, as ongoing work, some of the detail which may potentially change. Background The way a person copes and adapts to any cancer can have implications for their emotional well-being, their tendency to develop affective disorders (eg; anxiety and depression) and even their survival time. Understanding how people cope with cancer also has implications for supportive strategies in the overall aim of improving quality of life. Lung cancer has the highest mortality for cancers in men and women in Scotland and the survival rate is extremely poor, with 80% of people having died within one year of diagnosis. People tend to be diagnosed late, have metastases at presentation; co morbidity is likely to exist. People have relatively little time to adapt and to develop effective coping strategies. This study begins from the premise that in order to support people more effectively with lung cancer we need to understand some of the mechanisms/strategies they may use to cope. Only then can more effective psychosocial interventions be planned. Aims Methods To describe the strategies/mechanisms that people with lung cancer may use to cope with their diagnosis, treatment, and subsequent disease process. To describe coping process following lung cancer diagnosis that may help or hinder adaptation to the disease. This study would aim to follow up people with lung cancer over a period of time to gather an indication of coping processes. People diagnosed with lung cancer would be accessed through the chest clinic within the local teaching hospital and cancer treatment centre, where diagnoses of lung cancer are made weekly. Following ethical approval data would be collected as follows; 1. Initial interview 2-4 weeks after diagnosis. 2. Patient held diary to be kept at home. 3. Second interview 6-8 weeks after the first one. Interviews would be tape recorded and transcribed for analysis. The data collected from the two interviews and the diaries would then be subject to qualitative analysis for emergent themes on coping processes.

30 Findings The results would hopefully uncover aspects of coping strategies/processes that people with lung cancer adopt (whether these help or hinder adaptation). Relevance for policy and practice The purpose of this research is to raise the profile of psychosocial aspects of lung cancer care, in particular the role of coping mechanisms following diagnosis and during treatment. It would be hoped that data obtained would add to an understanding of coping processes, which could be used to plan supportive services and point to further areas of research.

31 Title Authors Listening to Different Voices Mary Thomas and Sonia Devereux, Macmillan GP Facilitator, Ninewells Hospital, Dundee A Qualitative Study of the Perceptions of Patients and Carers in Tayside of the Provision of Cancer and Palliative Care Background The importance of collecting views and information from patients and carers using the palliative care service was recognised whilst developing the Tayside Palliative Care Strategy. Aims Method Results The aim of the study was to identify the perceptions of patients and carers of the provision of palliative care across Tayside. A qualitative research methodology was used, 9 carers from rural and urban areas were invited to a focus group, individual interviews then took place with 3 patients with cancer and chronic disease. Finally a focus group was run with a group of patients (12). The questions asked in the focus group: given your experience of caring for someone and/or receiving palliative care: a. What had been the successes of the services and resources than had been provided? b. What had been the challenges and shortfalls to the system? c. If you were asked to re-design a system to provide palliative care, based on your own experience, what would be the essential features? The themes that were identified are described under the following five headings, each describing perceived successes and problems. 1. Communication and Information Issues a. Dialogue with professionals b. Communication between professionals c. Informed choice and control d. The paradox of communication. 2. Being Cared for as an individual with Dignity and Hope 3. The Process of Care a. Physical and emotional environment of care b. The importance of time c. Carer support 4. Professionals with Appropriate Skills 5. Accessing Resources