A systematic review of large-scale surveys of cancer survivors conducted in North America, 2000–2011
ABSTRACT Many large surveys collect data on cancer survivors, but few encompass the full spectrum of domains relevant to survivorship ranging from cancer care to quality of life to late- and long-term effects of cancer and its treatment. Here, we review large data sources in North America collecting cancer survivor-reported health information, and catalogue the domains of cancer survivorship each includes.
We identified surveys of cancer survivors through a comprehensive web search of federal government agencies, non-profit organizations, and related societies that support health care research or provide health care services, as well as a systematic review of literature indexed on PubMed from 2000-2011.
A total of 57 surveys were identified, 26 nationally representative surveys and 31 regional, state, or provincial surveys. Thirty-four surveys specifically targeted cancer survivors, and an additional two surveys had supplements or modules targeted at cancer survivors. Among the nationally representative surveys, general medical characteristics and medical conditions were the most frequently reported cancer survivorship domains, and information on cancer-related costs was least frequently reported.
Our review demonstrates that a large and growing number of surveys across the U.S. and Canada are collecting data on cancer survivors. These surveys differ in design, geographic region, primary population of interest, cancer site, and research areas of interest. They address a wide range of survivorship issues. Future cancer survivorship research should concentrate on understudied areas in order to better understand the challenges faced by this growing population.
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ABSTRACT: A priority of the UK National Cancer Survivorship Initiative is to increase collection of patient-reported outcome measures (PROMs) longitudinally post-diagnosis. This study aimed to gather cancer patients' and clinicians' opinions and preferences about the best time, in the secondary care pathway, to approach patients about joining longitudinal observational PROMs-based (LO-PROMs) research. The sample comprised 15 patients with non-metastatic breast, colorectal or prostate cancer, and 15 clinicians including surgeons, oncologists and nurse specialists. Patients and clinicians participated in one face-to-face topic-guided audio-recorded interview. Data were analysed using thematic content analysis. Patients did not want to be approached about LO-PROMs research early in the care pathway, near diagnosis and treatment planning or before any surgery and its results. Patients felt that LO-PROMs research is best introduced from the time people are 'settled' on (post-surgical) treatment regimens, provided they are coping well emotionally and not experiencing significant physical side effects; patients emphasised variability in people's experience of and response to cancer and treatment. Clinicians also advised against approach near diagnosis, although generally recommended initiating recruitment somewhat sooner than patients. Patients expressed strong homogeneous preferences and ideally wanted to be approached about LO-PROMs research when their initial fears and anxiety about cancer treatment and survival had diminished, and they felt some sense of certainty and optimism about the future. As the timeline of clinical events varies, maximising recruitment may mean approaching patients at varied time points post-diagnosis. Further recruitment implications are discussed.Supportive Care in Cancer 06/2012; 20(12):3365-72. DOI:10.1007/s00520-012-1518-4 · 2.50 Impact Factor
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ABSTRACT: INTRODUCTION: The prevalence of cancer survivorship in the USA is expected to increase in the future because the US population is increasing in size and is aging and because survival following diagnosis is improving for many types of cancer. Medical care costs associated with cancer are also projected to increase dramatically. However, currently available data for estimating medical care costs and other important aspects of the burden of cancer, including time spent receiving medical care, productivity loss due to morbidity for patients and their families, and financial hardship, are limited, particularly in the population under the age of 65. METHODS: We describe selected publicly available data sources for estimating the burden of cancer in the USA and a new collaborative effort to improve the quality of these data: the nationally representative Medical Expenditure Panel Survey (MEPS) Experiences with Cancer Survivorship Supplement. CONCLUSIONS: Data from this effort can be used to address key gaps in cancer survivorship research related to medical care costs, employment patterns, financial hardship, and other aspects of the burden of illness for cancer survivors and their families. IMPLICATIONS FOR CANCER SURVIVORS: Research using the MEPS Experiences with Cancer Survivorship Supplement can inform efforts by health care policy makers, healthcare systems, providers, and employers to improve the cancer survivorship experience in the USA.Journal of Cancer Survivorship 07/2012; DOI:10.1007/s11764-012-0221-2 · 3.29 Impact Factor
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ABSTRACT: This study examined how free-text comments from cancer survivors could complement formal patient-reported outcome measures (PROMs), as part of the England PROMs survey programme for cancer. A qualitative content analysis was conducted of responses to a single open-ended free-text question placed at the end of the cross-sectional population-based postal questionnaire. Individuals were identified through three UK Cancer Registries and questionnaires were posted to their home addresses. A random sample of individuals (n=4992) diagnosed with breast, colorectal, non-Hodgkins lymphoma or prostate cancer at 1, 2, 3 and 5 years earlier. 3300 participants completed the survey (68% response rate). Of these 1056 (32%) completed the free-text comments box, indicating a high level of commitment to provide written feedback on patient experience. Almost a fifth (19%) related experiences of excellent care during the treatment phase, with only 8% reporting negative experiences. This contrasted with experiences of care after primary cancer treatment where the majority were negative. Factors impacting negatively upon patient-reported outcomes included the emotional impact of cancer; poor experiences of treatment and care; comorbidities, treatment side effects, social difficulties and inadequate preparation for a wide range of sometimes long-lasting on-going physical and psychological problems. Mediating factors assisting recovery incorporated both professional-led factors, such as quality of preparation for anticipated problems and aftercare services, and participant-led factors, such as learning from other cancer survivors and self-learning through trial and error. The support of friends and family was also a factor in participants' outcomes. This analysis of free-text comments complements quantitative analysis of PROMs measure's by illuminating relationships between factors that impact on quality of life (QoL) and indicate why cancer patients may experience significantly worse QoL than the general population. The data suggest more systematic preparation and aftercare for individuals to self-manage post-treatment problems might improve QoL outcomes among cancer survivors.BMJ Open 04/2013; 3(4). DOI:10.1136/bmjopen-2012-002316 · 2.06 Impact Factor