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      Knowledge, ignorance and priorities for research in key areas of cancer survivorship: findings from a scoping review

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          Abstract

          Background:

          Patients who have completed initial cancer treatment (cancer survivors) have been relatively neglected. We need data to help us better understand the needs of this group and to underpin evidence-based service development.

          Methods:

          Scoping reviews of research published in the last two decades focussing on the problems faced by cancer survivors, and the effectiveness of interventions for these problems were undertaken. The aim was to identify what we know, what we do not know and opportunities where research could provide new information. We searched for, retrieved and rapidly appraised systematic reviews sourced from the most common electronic databases supplemented by more recently published individual studies.

          Results:

          The research evidence is surprisingly limited. We have some knowledge of the prevalence and nature of depression, pain and fatigue in cancer survivors. We know much less about cognitive and physical impairment, employment, financial well-being and relationships. Even where we have evidence, it is mostly of only moderate quality, is most often only for breast cancer and focuses almost exclusively on the early phase of survivorship. We have good evidence for the effectiveness of drug treatments for pain and moderate evidence for fatigue and depression, but not for other symptoms. Interventions based on rehabilitative and self-management approaches remain in the early stages of evaluation.

          Interpretation:

          There has been a substantial amount of research describing many of the problems experienced by the cancer survivors. This is strongest in the area of symptoms in the period soon after treatment. However, the quality of the evidence is often poor, and some topics have been little examined. We urgently need data on the natural evolution and scale of the problems of cancer survivors obtained from well-designed, large-scale cohort studies and the robust testing of interventions in clinical trials. Given the current financially constrained research funding environment, we suggest areas in which strategic investment might give findings that have the potential to make a major impact on patient well-being in a 5-year time scale.

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          Most cited references3

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          Cancer prevalence in the United Kingdom: estimates for 2008

          Background: Identifying and addressing the requirements of cancer survivors is currently a high priority for the NHS, yet little is known about the population of cancer survivors in the United Kingdom. Methods: Data from cancer registries in England, Northern Ireland, Scotland and Wales were analysed to provide limited-duration prevalence estimates for 2004. Log-linear regression models were used to extend these to complete prevalence estimates. Trends in prevalence from 2000 to 2004 were used to project complete prevalence estimates forward from 2004 to 2008. Results: We estimated that in total, there were 2 million cancer survivors in the United Kingdom at the end of 2008, ∼3% of the population overall and 1 in 8 of those aged 65 years and more. Prostate and female breast cancers were the most prevalent. The number of cancer survivors is increasing by ∼3% each year. Estimates are also provided by time since diagnosis. Conclusion: These estimates are the most up-to-date available, and as such will be useful for statutory and voluntary sector organisations that are responsible for planning and providing treatment and support to cancer survivors in the United Kingdom.
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            The health and well-being of cancer survivors in the UK: findings from a population-based survey

            Background: To compare self-reported health and well-being in a sample of cancer survivors with individuals who have not had cancer and with individuals who have a serious chronic condition other than cancer. Patients and methods A cross-sectional survey drawn from an online panel of 400 000 UK citizens supplemented with other online recruitment and telephone recruitment. The participants were 4892 individuals 30 years of age or above, including 780 individuals with a previous cancer diagnosis, 1372 individuals with one or more of 10 chronic conditions but not cancer and 2740 individuals without a previous cancer diagnosis or chronic condition. Thirteen measures of health and well-being were constructed from answers to 25 survey items covering physical, psychological and social dimensions of health and well-being. Results: Cancer survivors were significantly more likely to report poor health outcomes across all 13 measures than those with no history of cancer or a chronic condition. The adjusted odds ratios for cancer survivors with no chronic conditions compared with healthy participants ranged from 1.37 (95% confidence interval (CI): 1.31–1.96) for emotional well-being to 3.34 (95% CI: 2.74–4.08) for number of health professionals consulted in the last 12 months. The health profile of cancer survivors was similar to those with a history of a serious chronic health condition. Conclusions: A substantial number of individuals who have had a diagnosis of cancer experience ongoing poor health and well-being following cancer and cancer treatment. The results of this study provide an initial basis for the development of specific help and support for cancer survivors.
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              Surviving cancer: a new reality and a new challenge.

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                Author and article information

                Journal
                Br J Cancer
                British Journal of Cancer
                Nature Publishing Group
                0007-0920
                1532-1827
                08 November 2011
                03 November 2011
                8 November 2011
                : 105
                : S1
                : S82-S94
                Affiliations
                [1 ]simpleFaculty of Health Sciences, University of Southampton , Building 67, Highfield, Southampton SO17 1BJ, UK
                [2 ]simpleSchool of Nursing, Midwifery and Social Work, University of Manchester , Jean McFarlane Building, Oxford Street, Manchester M13 9PL, UK
                [3 ]simpleSt James' Institute of Oncology, Beckett Street , Leeds LS9 7TF, UK
                [4 ]simpleFlorence Nightingale School of Nursing & Midwifery, King's College London , James Clerk Maxwell Building, 57 Waterloo Road, London SE1 8WA, UK
                [5 ]simpleInternational Observatory on End of Life Care, Division of Health Research, School of Health and Medicine, University of Lancaster , Lancaster LA1 4YT, UK
                [6 ]simplePsychological Medicine Research, School of Molecular and Clinical Medicine, University of Edinburgh , Edinburgh EH10 5HF, UK
                [7 ]simpleThe Christie NHS Foundation Trust, Wilmslow Road , Manchester M20 4BX, UK
                [8 ]simpleLeeds Institute of Molecular Medicine, University of Leeds, St James University Hospital , Leeds LS9 7TF, UK
                [9 ]simplePsychological Medicine Research, Department of Psychiatry, University of Oxford, Warneford Hospital , Oxford OX3 7JX, UK
                Author notes
                Article
                bjc2011425
                10.1038/bjc.2011.425
                3251948
                22048036
                5785c30d-7026-4bc3-872e-0b6aaf0c0774
                Copyright © 2011 Cancer Research UK

                This work is licensed under the Creative Commons Attribution-NonCommercial-Share Alike 3.0 Unported License. To view a copy of this license, visit http://creativecommons.org/licenses/by-nc-sa/3.0/

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                Categories
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                Oncology & Radiotherapy
                intervention,scoping review,cancer survivors,research priorities,unmet needs

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