The health and well-being of cancer survivors in the UK: findings from a population-based survey (original) (raw)
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A comparative analysis of the health and well-being of cancer survivors to the general population
Supportive Care in Cancer, 2012
The population of people surviving cancer is continually increasing and currently cancer survivors represent approximately 3.7% of the American population and 3% of the UK population. There is limited and inconclusive empirical evidence regarding the long-term health and wellbeing of cancer survivors. Methods: 289 cancer survivors and 262 matched-age and sex patients from the same group of General (primary care) Practices completed postal questionnaires measuring health and wellbeing, health service utilisation and satisfaction and health care needs. Main results: Cancer survivors reported poorer health and wellbeing and health service utilisation than the general population. Despite this poorer health the majority of cancer survivors reported satisfaction with services and almost two-thirds of survivors did not report any needs. Conclusions: The majority of cancer survivors do not appear to require additional support services. There is, however, a subgroup of survivors who warrant specialist support, particularly survivors who are older, experience late effects and have had adjuvant treatments. Future research should focus on developing methods that could be used in routine clinical practice to identify' at risk' or vulnerable patients and to provide appropriate and timely support.
Routinely collected health care data (the Scottish Cancer Registry) were record-linked to representative survey data on health and health behaviours (the Government-funded Scottish Health Survey) to compare the health and well-being of cancer survivors in Scotland with people who had never had cancer; a methodological approach which has been under-utilised. After adjusting for age, sex and occupational classification, people with a previous diagnosis of cancer (even > 6 years previously) (n = 507) were more likely to have poorer self-assessed health, reduced activity and psychological morbidity than people who had never had cancer (n = 25,631).
BMJ open, 2013
To determine the feasibility of collecting population-based patient-reported outcome measures (PROMs) in assessing quality of life (QoL) to inform the development of a national PROMs programme for cancer and to begin to describe outcomes in a UK cohort of survivors. Cross-sectional postal survey of cancer survivors using a population-based sampling approach. English National Health Service. 4992 breast, colorectal, prostate and non-Hodgkin's lymphoma (NHL) survivors 1-5 years from diagnosis. Implementation issues, response rates, cancer-specific morbidities utilising items including the EQ5D, tumour-specific subscales of the Functional Assessment of Cancer Therapy and Social Difficulties Inventory. 3300 (66%) survivors returned completed questionnaires. The majority aged 85+ years did not respond and the response rates were lower for those from more deprived area. Response rates did not differ by gender, time since diagnosis or cancer type. The presence of one or more long-term ...
The well-being of long-term cancer survivors
The American journal of managed care, 2018
OBJECTIVES To compare the well-being of long-term cancer survivors with that of US residents of similar age and demographic characteristics, patients recently diagnosed with cancer, and individuals with chronic illness. STUDY DESIGN Retrospective observational study. METHODS Using the Health and Retirement Study, a survey of US residents older than 50 years, we defined 4 cohorts: long-term cancer survivors (>4 years post diagnosis), individuals recently diagnosed with cancer (≤4 years post diagnosis), individuals with chronic illness, and US residents older than 50 years ("nationally representative cohort"). Well-being measures included self-reported health, utility, happiness, medical utilization and spending, employment, and earnings, and these measures were compared across cohorts, adjusting for survey year, demographic characteristics, smoking, and number of comorbidities. We imputed medical spending using the Medical Expenditure Panel Survey and the Medicare Curren...
European Journal of Oncology Nursing, 2018
Haematological cancers often require aggressive treatment which can cause both late and long term physical and psychosocial effects that can appear years after treatment ends. However there is a paucity of studies that focus on psychosocial issues among post-treatment haematological cancer survivors. This research aimed to explore the strategies used by haematological cancer survivors to maintain psychosocial wellbeing in the post-treatment period, and examine the barriers they identify to maintaining wellbeing. Method: This research utilised a qualitative research design. Participants were recruited through the New Zealand Cancer Registry. Semi-structured interviews were conducted with 23 post-treatment haematological cancer survivors. A thematic analysis was conducted to analyse the data. Results: The analysis identified three themes describing the strategies that enabled participants to maintain psychosocial wellbeing: inner strength; support from personal connections; support from health professionals/ support organisations. Two themes were also identified describing the barriers to psychosocial wellbeing: barriers to utilising personal connections; barriers to utilising support from health professionals/support organisations. Conclusions: Psychosocial support from others was essential in maintaining wellbeing for survivors. The participants who had ready support from family and friends reported needing less psychosocial support from other sources. However, those who needed more psychosocial support did not always receive it, or know where to find it. The key barriers to this type of support were informational gaps and not having a specific contact person to ask for help. Further research is needed to support the development of interventions to reduce psychosocial distress among this underserved group of cancer survivors.
BMC Medicine, 2020
Background Improved survival means that cancer is increasingly becoming a chronic disease. Understanding and improving functional outcomes are critical to optimising survivorship. We quantified physical and mental health-related outcomes in people with versus without cancer, according to cancer type. Methods Questionnaire data from an Australian population-based cohort study (45 and Up Study (n = 267,153)) were linked to cancer registration data to ascertain cancer diagnoses up to enrolment. Modified Poisson regression estimated age- and sex-adjusted prevalence ratios (PRs) for adverse person-centred outcomes—severe physical functional limitations (disability), moderate/high psychological distress and fair/poor quality of life (QoL)—in participants with versus without cancer, for 13 cancer types. Results Compared to participants without cancer (n = 244,000), cancer survivors (n = 22,505) had greater disability (20.6% versus 12.6%, respectively, PR = 1.28, 95%CI = (1.25–1.32)), psych...
Journal of Cancer Survivorship, 2009
Introduction The number of cancer survivors experiencing disease progression (DP) is increasing with the number of cancer survivors. However, little is known whether DP affects health-related quality of life (HRQL) of long-term cancer survivors. We aimed therefore to compare the health status (HS) and HRQL of DP and disease-free (DF) survivors up to 15 years after initial diagnosis. Methods 232 cancer survivors with DP identified through the Eindhoven Cancer Registry were matched with 232 DF survivors of similar demographic and clinical characteristics. Patients completed generic HS (SF-36) and cancer-specific HRQL (QOL-CS) questionnaires 5-15 years after diagnosis. Results Compared with DF survivors, DP survivors exhibited significantly lower scores on all SF-36 and QOL-CS (except spiritual well-being) dimensions. DF survivors had better scores than the normative population on all SF-36 dimensions. Among survivors with DP, those with short survival (<5 years) had significantly poorer HS scores on all dimensions except bodily pain compared with the normative population. Comparatively, the long survival (≥5 years) DP group had better HRQL than the short DP group but poorer HRQL than the normative population. In multivariate analyses, DP and DF survival time were independently associated with aspects of HS and HRQL in cancer survivors. Discussions/Conclusions DP cancer survivors have poorer long-term HS and HRQL compared with DF survivors. However, there is suggestion that HS and HRQL does improve over time following DP. Implication for Cancer Survivors Although DP survivors report poorer long-term HRQL compared with DF cancer survivors, results suggest that time can attenuate the distress of DP on HRQL. Psycho-educational programs could help to increase patients' sense of empowerment and personal control should DP occur.
Improving the health and well-being of cancer survivors: past as prologue
Psycho-Oncology, 2008
During the past two decades, there have been a number of unsuccessful replication attempts of our finding that group psychotherapy improves cancer survival. One explanation for this failure is that the wrong phenomenon has been studied. Rather than focusing on the effects of the psychotherapeutic relationship, perhaps, the focus should have been on the social support provided and networks developed by these groups. Since the late 1970s, a growing body of research indicates the importance of social networks and social support on reductions in not only all cause mortality, but also disease specific mortality including cancer. We have learned about how the health, well-being, and ultimate survival of cancer patients is improved by social support and social networks. The social milieu within which we live can provide resources that facilitate reintegration into society. These resources at the individual level, such as one's perception of social and emotional support, at the level of one's social ties with family and friends, and at the community level appear to improve survival across disease conditions including cancer. Even though, the mechanisms by which these endpoints are achieved remain elusive, there is much that can be done. The challenge of our time is to translate what we already know into programs to improve quality of life and to focus research toward increasing our understanding the mechanisms.
Health and quality of life outcomes, 2018
The number of cancer survivors is growing steadily and increasingly, clinical trials are being designed to include long-term follow-up to assess not only survival, but also late effects and health-related quality of life (HRQOL). Therefore it is is essential to develop patient-reported outcome measures (PROMs) that capture the full range of issues relevant to disease-free cancer survivors. The objectives of this project are: 1) to develop a European Organisation for Research and Treatment of Cancer (EORTC) questionnaire that captures the full range of physical, mental and social HRQOL issues relevant to disease-free cancer survivors; and 2) to determine at which minimal time since completion of treatment the questionnaire should be used. We reviewed 134 publications on cancer survivorship and interviewed 117 disease-free cancer survivors with 11 different types of cancer across 14 countries in Europe to generate an exhaustive, provisional list of HRQOL issues relevant to cancer surv...