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Survivors of Adult Cancer – their use of primary services and unmet needs Nada Khan, (formerly University of Oxford), Kings College London Email: [email protected] Summary This study was funded by Macmillan’s Research Fellowship Scheme. The main aim of the research was to examine the use of primary care services by cancer survivors and to identify their unmet needs for health care. Background The research focused on the survivors of three types of cancer: breast, colorectal and prostate. The specific aims of the study were: 1. To compare the use and quality of primary care services in a group of long-term survivors of breast, colorectal and prostate cancer. 2. To compare the risks associated with being a cancer survivor in a group of long-term survivors of breast, colorectal and prostate cancer. 3. To investigate the views of long-term cancer survivors on their unmet needs and how these needs might be addressed. Data was compiled and analysed from the General Practice Research Database (GPRD), the National Cancer Intelligence Network and the Office for National Statistics. Data from the Hospital Episodes Statistics (HES) was also used. The data provided information about diagnosis, prescriptions, referrals and treatment outcomes. Data was analysed for a group of 145,662 patients – comprising 29,244 cancer survivors and 116,418 controls. In addition the study had a qualitative component, comprising qualitative interviews with 40 survivors or breast, colorectal and prostate cancer. Findings The study found differences between cancer survivors and the control group in terms of their use of primary care services. For example, cancer survivors were found to have a higher rate of primary care consultations compared to controls up to 10 years post-diagnosis and accessed more anti-depressants and anxiolytics compared to controls. In addition differences were found in relation to morbidity and mortality. Breast cancer survivors were found to be at increased risk of developing heart failure, coronary artery disease, hypothyroidism and lymphoedema. There was evidence for increased risk of dementia and diabetes amongst colorectal cancer survivors and all three groups of cancer survivors were at significantly higher risk of developing osteoporosis more than 5 years post-diagnosis. The qualitative interviews found that some long-term cancer survivors had on-going needs such as needs for psychological services, access to complementary therapies and information. The qualitative interview project is being adapted for use on the Health Talk Online website (www.healthtalkonline.org) and is expected to be launched in April 2013. Why is this work important? There are increasing numbers of adult survivors due to better cancer treatments in an ageing population. Five- and ten-year survival rates have been improving steadily for the last 30 years. As more people diagnosed with cancer survive for longer, it is increasingly important to consider the long-term needs of this group. In the UK, most patients are followed up in secondary care for three to five years and then discharged back to primary care. Primary care may be well placed to cater for the needs of these patients. However, patients are currently discharged back to primary care without any special follow-up arrangements. Publications related to this research Khan NF, Mant D, Carpenter L, Forman D, and Rose PW. Long-term health outcomes in a British cohort of breast, colorectal and prostate cancer survivors: a database study. Br J Cancer. 2011 November 8; 105(S1): S29–S37. Khan NF, Evans J and Rose PW. A qualitative study of unmet needs and interactions with primary care among cancer survivors. Br J Cancer 105: S46-S51; doi:10.1038/bjc.2011.422 Khan NF, Rose PW, Evans J. Defining cancer survivorship: a more transparent approach is needed. Journal of Cancer Survivorship. 2011. DOI: 10.1007/s11764-011-0194-6. Khan NF, Harrison S, Rose PW, Ward A, Evans J. Interpretation and acceptance of the term ‘cancer survivor’: a UK based qualitative study. European Journal of Cancer Care. 2011. DOI: 10.1111/j.1365-2354.2011.01277.x Khan NF, Mant D, Rose PW. Quality of care for chronic diseases in a British cohort of longterm cancer survivors. Ann Fam Med. 2010. 8(5):418-24. Khan NF, Ward AM, Watson E, Rose PW. Consulting and prescribing behaviour for anxiety and depression in long-term survivors of cancer in the UK. Eur J Cancer. 2010. 46(18):333944. Khan NF, Carpenter L, Watson E, Rose PW. Cancer screening and preventative care among long-term cancer survivors in the United Kingdom. Br J Cancer. 2010. 102(7):108590. Khan NF, Ward A, Watson E, Austoker J, Rose PW. Long-term survivors of adult cancers and uptake of primary health services: a systematic review. Eur J Cancer. 2008. 44(2):195204.