A systematic review of large-scale surveys of cancer survivors conducted in North America, 2000–2011

ArticleinJournal of Cancer Survivorship 6(2):115-45 · March 2012with10 Reads
DOI: 10.1007/s11764-012-0214-1 · Source: PubMed
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.
    • "Cancer registries and increasingly electronic health records (EHR) [9,10] provide clinical, treatment, and some sociodemographic data but do not routinely include PROs. A number of large-scale mailed surveys have reported cancer survivors' functional and psychosocial well-being, lifestyle behaviors, and supportive care needs with some of the surveys using cancer registries for identification of survivors [11]. Traditionally, cancer registries have been used to record incidence, prevalence, and survival using data collected prospectively for all cancer patients. "
    [Show abstract] [Hide abstract] ABSTRACT: Routine measurement of Patient Reported Outcomes (PROs) linked with clinical data across the patient pathway is increasingly important for informing future care planning. The innovative electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system was developed to integrate PROs, collected online at specified post-diagnostic time-points, with clinical and treatment data in cancer registries. This study tested the technical and clinical feasibility of ePOCS by running the system with a sample of potentially curable breast, colorectal, and prostate cancer patients in their first 15 months post diagnosis. Patients completed questionnaires comprising multiple Patient Reported Outcome Measures (PROMs) via ePOCS within 6 months (T1), and at 9 (T2) and 15 (T3) months, post diagnosis. Feasibility outcomes included system informatics performance, patient recruitment, retention, representativeness and questionnaire completion (response rate), patient feedback, and administration burden involved in running the system. ePOCS ran efficiently with few technical problems. Patient participation was 55.21% (636/1152) overall, although varied by approach mode, and was considerably higher among patients approached face-to-face (61.4%, 490/798) than by telephone (48.8%, 21/43) or letter (41.0%, 125/305). Older and less affluent patients were less likely to join (both P<.001). Most non-consenters (71.1%, 234/329) cited information technology reasons (ie, difficulty using a computer). Questionnaires were fully or partially completed by 85.1% (541/636) of invited participants at T1 (80 questions total), 70.0% (442/631) at T2 (102-108 questions), and 66.3% (414/624) at T3 (148-154 questions), and fully completed at all three time-points by 57.6% (344/597) of participants. Reminders (mainly via email) effectively prompted responses. The PROs were successfully linked with cancer registry data for 100% of patients (N=636). Participant feedback was encouraging and positive, with most patients reporting that they found ePOCS easy to use and that, if asked, they would continue using the system long-term (86.2%, 361/419). ePOCS was not administratively burdensome to run day-to-day, and patient-initiated inquiries averaged just 11 inquiries per month. The informatics underlying the ePOCS system demonstrated successful proof-of-concept - the system successfully linked PROs with registry data for 100% of the patients. The majority of patients were keen to engage. Participation rates are likely to improve as the Internet becomes more universally adopted. ePOCS can help overcome the challenges of routinely collecting PROs and linking with clinical data, which is integral for treatment and supportive care planning and for targeting service provision.
    Full-text · Article · Oct 2013
    • "For one of the counties in our target region, the age-adjusted incidence rate per 100,000 for all cancers was 1,271, which is the highest among all 67 Florida counties [35]. This latter point emphasizes the importance of designing highly effective interventions to meet the needs of cancer survivors for this region [36]. "
    [Show abstract] [Hide abstract] ABSTRACT: The degree of health disparities present in rural communities is of growing concern and is considered "urgent" since rural residents lag behind their urban counterparts in health status. Understanding the prevalence and type of chronic diseases in rural communities is often difficult since Americans living in rural areas are reportedly less likely to have access to quality health care, although there are some exceptions. Data suggest that rural residents are more likely to engage in higher levels of behavioral and health risk-taking than urban residents, and newer evidence suggests that there are differences in health risk behavior within rural subgroups. The objective of this report is to characterize the prevalence of four major and costly chronic diseases (diabetes, cardiovascular disease, cancer, and arthritis) and putative risk factors including depressive symptoms within an understudied rural region of the United States. These four chronic conditions remain among the most common and preventable of health problems across the United States. Using survey data (N = 2526), logistic regression models were used to assess the association of the outcome and risk factors adjusting for age, gender, and race. Key findings are (1) Lower financial security was associated with higher prevalence of cardiovascular disease, arthritis, and diabetes, but not cancer. (2) Higher levels of depressive symptoms were associated with higher prevalence of cardiovascular disease, arthritis, and diabetes. (3) Former or current smoking was associated with higher prevalence of cardiovascular disease and cancer. (4) Blacks reported higher prevalence of diabetes than Whites; Black women were more likely to report diabetes than all other groups; prevalence of diabetes was greater among women with lower education than among women with higher education. (5) Overall, the prevalence of diabetes and arthritis was higher than that reported by Florida and national data. The findings presented in this paper are derived from one of only a few studies examining patterns of chronic disease among residents of both a rural and lower income geographic region. Overall, the prevalence of these conditions compared to the state and nation as a whole is elevated and calls for increased attention and tailored public health interventions.
    Full-text · Article · Oct 2013
  • [Show abstract] [Hide abstract] 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.
    Article · Jun 2012
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