Cancer survivorship research: the challenge of recruiting adult long term cancer survivors from a cooperative clinical trials group.
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ABSTRACT:
SUBMITTER: Ganz PA
PROVIDER: S-EPMC2714451 | biostudies-other | 2009 Sep
REPOSITORIES: biostudies-other
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Project description:A high proportion of pediatric cancer patients are now surviving into adulthood, but are at increased risk for late morbidity and premature mortality related to their diagnosis and therapeutic exposures. Little is known about the potential success of recruiting adult survivors of childhood cancer into research projects that would require a risk-based health evaluation within a clinical setting.Pediatric cancer survivors and siblings eligible for the current study were Childhood Cancer Survivor Study participants who lived within 100 miles of one of five Consortium for Pediatric Intervention Research institutions, regardless of where they were initially diagnosed and treated. A short survey was mailed to 829 survivors and 373 siblings to identify factors that predict interest, potential barriers, and motivators, to participation in research including a risk-based clinical evaluation.Overall, 92% of survivors responding to the survey were very interested/interested in participating in a research study requiring a visit to a local hospital clinic. Siblings of survivors were less interested than survivors in participating in such a study, with only 78% indicating that they were very interested/interested. Potential motivators to participation included visiting their treating hospital and receiving health information. The primary barrier to participation was related to taking time off from work.This study demonstrates that a subgroup of survivors would be willing to return to a long-term follow-up center to participate in intervention-based research. Identified motivating factors and perceived barriers need to be considered in determining the feasibility, design and execution of future research.
| S-EPMC4164345 | biostudies-literature
Project description:BackgroundGathering information directly from cancer survivors has advanced our understanding of the cancer survivorship experience. However, it is unknown whether surveys can distinguish important subgroups of cancer survivors. This study aimed to describe the current landscape of survey questions used to identify and describe cancer survivors in national cross-sectional studies.MethodsUsing publicly available databases, the authors identified national cross-sectional surveys used in the United States within the past 15 years that included a question on self-reported history of cancer. After abstracting questions and response items used to identify cancer survivors, they conducted a descriptive analysis.ResultsThe authors identified 14 national cross-sectional surveys, with half administered to the general population and the other half administered to cancer survivors. The most common question used to identify cancer survivors was "Have you ever been told by a doctor or other health professional that you had cancer?" Most surveys had questions asking participants to identify a single cancer type (n = 11), multiple prior cancer diagnoses or types (n = 11), and the time from diagnosis (n = 12). Treatment questions varied from active treatment status to specific treatments received. Questions addressing cancer stage (n = 2), subtypes (n = 1), metastatic status (n = 3), and recurrence (n = 4) were less frequently included.ConclusionsThere is no standard method for assessing self-reported cancer history, and this limits the ability to distinguish among potentially important subgroups of survivors. Future cross-sectional surveys that capture nuanced data elements, such as cancer types, stages/subtypes, metastatic/recurrent status, and treatments received, can help to fill important gaps in cancer survivorship research and clinical care.
| S-EPMC8738118 | biostudies-literature
Project description:BackgroundParticipation of Adolescents and Young Adults with cancer (AYAs: 18-39 years at time of diagnosis) in patient-reported outcome studies is warranted given the limited knowledge of (long-term) physical and psychosocial health outcomes. We examined the representativeness of AYAs participating in the study, to observe the impact of various invitation methods on response rates and reasons for non-participation.MethodsA population-based, cross-sectional cohort study was performed among long-term (5-20 years) AYA cancer survivors. All participants were invited using various methods to fill in a questionnaire on their health outcomes, including enclosing a paper version of the questionnaire, and sending a reminder. Those who did not respond received a postcard in which they were asked to provide a reason for non-participation.ResultsIn total, 4.010 AYAs (response 36%) participated. Females, AYAs with a higher socio-economic status (SES), diagnosed more than 10 years ago, diagnosed with a central nervous system tumor, sarcoma, a lymphoid malignancy, stage III, or treated with systemic chemotherapy were more likely to participate. Including a paper questionnaire increased the response rate by 5% and sending a reminder by 13%. AYAs who did not participate were either not interested (47%) or did want to be reminded of their cancer (31%).ConclusionsStudy participation was significantly lower among specific subgroups of AYA cancer survivors. Higher response rates were achieved when a paper questionnaire was included, and reminders were sent. To increase representativeness of future AYA study samples, recruitment strategies could focus on integrating patient-reported outcomes in clinical practice and involving AYA patients to promote participation in research.
| S-EPMC9406992 | biostudies-literature
Project description:BackgroundThe Institute of Medicine has called for approaches to help maximize the return on investments (ROI) in cancer clinical trials. Value of Research (VOR) is a health economics technique that estimates ROI and can inform research prioritization. Our objective was to evaluate the impact of using VOR analyses on the clinical trial proposal review process within the SWOG cancer clinical trials consortium.MethodsWe used a previously developed minimal modeling approach to calculate VOR estimates for 9 phase II/III SWOG proposals between February 2015 and December 2016. Estimates were presented to executive committee (EC) members (N = 12) who determine which studies are sent to the National Cancer Institute for funding consideration. EC members scored proposals from 1 (best) to 5 based on scientific merit and potential impact before and after receiving VOR estimates. EC members were surveyed to assess research priorities, proposal evaluation process satisfaction, and the VOR process.ResultsValue of Research estimates ranged from -$2.1B to $16.46B per proposal. Following review of VOR results, the EC changed their score for eight of nine proposals. Proposal rankings were different in pre- vs postscores (P value: 0.03). Respondents had mixed views of the ultimate utility of VOR for their decisions with most supporting (42%) or neutral (41%) to the idea of adding VOR to the evaluation process.ConclusionsThe findings from this pilot study indicate use of VOR analyses may be a useful adjunct to inform proposal reviews within NCI Cooperative Clinical Trials groups.
| S-EPMC6144145 | biostudies-literature
Project description:PurposeTo examine whether survivorship care planning (receipt of written treatment summary or instructions for follow-up care) is associated with unmet needs among adolescent and young adult (AYA) cancer survivors (aged 15-39 at diagnosis).MethodsWe used data from the 2010 LIVESTRONG Survey for People Affected by Cancer. Outcome variables were survivor reports of unmet needs, including information on late effects of cancer treatment, fertility issues, cancer recurrence, and family cancer risk. We used multivariable logistic regression models to determine whether receipt of either a treatment summary or follow-up care instructions was associated with each unmet needs after controlling for sociodemographic and cancer history factors.ResultsOf the AYA respondents (N = 1395), only 30% reported receipt of a written treatment summary and 86% received instructions for follow-up care. The most commonly reported unmet need was addressing recurrence concerns (80%), followed by information on late effects (78%), family risk of cancer (51%), and fertility information (45%). In multivariable analyses, receipt of a written treatment summary was associated with lower odds of having unmet needs about late effects information (odds ratio; OR = 0.51 [0.37-0.71]) and recurrence concerns (OR = 0.55 [0.39-0.79]). Receipt of follow-up care instructions was associated with lower odds of unmet needs about late effects information (OR = 0.29 [0.15-0.58]) and fertility information (OR = 0.62 [0.42-0.91]).ConclusionsSurvivorship care planning including written treatment summaries and follow-up care instructions may help reduce unmet information and service needs of AYA survivors. This study provides further evidence for the importance of survivorship care planning as a way to improve survivor outcomes.
| S-EPMC5467130 | biostudies-literature
Project description:The extent to which trial-level factors differentially influence accrual to trials has not been comprehensively studied. Our objective was to evaluate the empirical relationship and predictive properties of putative risk factors for low accrual in the National Cancer Institute's (NCI's) Cooperative Group Program, now the National Clinical Trials Network (NCTN). Data from 787 phase II/III adult NCTN-sponsored trials launched between 2000 and 2011 were used to develop a logistic regression model to predict low accrual, defined as trials that closed with or were accruing at less than 50% of target; 46 trials opened between 2012 and 2013 were used for prospective validation. Candidate predictors were identified from a literature review and expert interviews; final predictors were selected using stepwise regression. Model performance was evaluated by calibration and discrimination via the area under the curve (AUC). All statistical tests were two-sided. Eighteen percent (n = 145) of NCTN-sponsored trials closed with low accrual or were accruing at less than 50% of target three years or more after initiation. A multivariable model of twelve trial-level risk factors had good calibration and discrimination for predicting trials with low accrual (AUC in trials launched 2000-2011 = 0.739, 95% confidence interval [CI] = 0.696 to 0.783]; 2012-2013: AUC = 0.732, 95% CI = 0.547 to 0.917). Results were robust to different definitions of low accrual and predictor selection strategies. We identified multiple characteristics of NCTN-sponsored trials associated with low accrual, several of which have not been previously empirically described, and developed a prediction model that can provide a useful estimate of accrual risk based on these factors. Future work should assess the role of such prediction tools in trial design and prioritization decisions.
| S-EPMC5964887 | biostudies-literature
Project description:PurposeFactors captured in a geriatric assessment can predict morbidity and mortality in older adults, but are not routinely measured in cancer clinical trials. This study evaluated the implementation of a geriatric assessment tool in the cooperative group setting.Patients and methodsPatients age ≥ 65 with cancer, who enrolled on cooperative group cancer trials, were eligible to enroll on Cancer and Leukemia Group B (CALGB) 360401. They completed a geriatric assessment tool before initiation of protocol therapy, consisting of valid and reliable geriatric assessment measures which are primarily self-administered and require minimal resources and time by healthcare providers. The assessment measures functional status, comorbidity, cognitive function, psychological state, social support, and nutritional status. The protocol specified criteria for incorporation of the tool in future cooperative group trials was based on the time to completion and percent of patients who could complete their portion without assistance. Patient satisfaction with the tool was captured.ResultsOf the 93 patients who enrolled in this study, five (5%) met criteria for cognitive impairment and three did not complete the cognitive screen, leaving 85 assessable patients (median age, 72 years). The median time to complete the geriatric assessment tool was 22 minutes, 87% of patients (n = 74) completed their portion without assistance, 92% (n = 78) were satisfied with the questionnaire length, 95% (n = 81) reported no difficult questions, and 96% (n = 82) reported no upsetting questions. One hundred percent of health care professionals completed their portion.ConclusionThis brief, primarily self-administered geriatric assessment tool met the protocol specified criteria for inclusion in future cooperative group clinical trials.
| S-EPMC3083997 | biostudies-literature
Project description:BackgroundLimited information is available about the representativeness of survivors engaging in patient-centered research, despite the potential for threats to generalizability. We thus aimed to assess the representativeness of survivors engaged or interested in research development.MethodsWe used data from the Health Information National Trends Survey, a nationally representative survey, to identify survivors of adult cancers. Our outcomes of interest were based on responses to questions about engagement or interest in developing patient-centered research. We estimated the ratio of relative frequencies (RRF) and corresponding 95% confidence limits (CL) of sociodemographic and survivorship characteristics between survivors engaged or interested in patient-centered research and the overall survivor population.ResultsOur study population comprised 934 survivors, of whom 5% reported being engaged in patient-centered research and 26% reported an interest in participating. Relative frequencies of characteristics were discordant for engaged survivors but largely similar for interested survivors compared with all survivors. In particular, engaged survivors had a higher relative frequency of individuals ages 50 to 64 years (RRF = 1.7; 95% CL, 1.1-2.5), Hispanic (RRF = 2.9; 95% CL, 1.2-6.9), non-Hispanic Black (RRF = 2.9; 95% CL, 1.1-2.5), and unemployment (RRF = 4.7; 95% CL, 1.4-16).ConclusionsWe observed several meaningful differences in the characteristics of survivors engaged in patient-centered research compared with all survivors, which raises concerns about the generalizability of findings from such studies.ImpactPatient-centered research may not benefit the broader survivor community if survivors engaging in research development are not representative of all survivors. Greater attention to recruiting mechanisms is necessary to avoid creating disparities.
| S-EPMC7007350 | biostudies-literature
Project description:Objective To assess recall bias by evaluating how well female cancer survivors remember details regarding their cancer diagnosis, treatment, and fertility preservation (FP) counseling. Oncofertility literature cites recall bias as a pitfall of retrospective surveys, but limited data exist to quantify this bias. Design Retrospective secondary analysis of cross-sectional survey data. Setting Single academic medical center. Patient(s) Female oncology patients of reproductive age, 18–44 years old, at least 6 months past their last chemotherapy treatment. Intervention(s) Not applicable. Main Outcome Measure(s) Recall of details surrounding cancer diagnosis and chemotherapy regimens, recall of FP counseling and ovarian reserve testing, and rates of chart-documented FP counseling. Result(s) In total, 117 patients completed the survey, with 112 verified via chart review. When asked to report the chemotherapy regimen, 57% (64 of the 112) marked “I don’t know/prefer not to say.” Regarding FP, 80% (90 of the 112) denied being offered counseling. Of the 37 (33%) who had documented FP conversations, 13 (35%) did not recall mention of fertility. Only 2 of 8 patients with ovarian reserve testing recalled this being performed at their initial visit. Multivariable logistic regression revealed older age was significantly associated with not being offered FP (odds ratio [OR] 0.87). Conclusion(s) Our results confirm that the accuracy of oncology patients’ reporting is limited by a poor recall, particularly regarding their specific chemotherapy regimen. More than 1 in 3 patients documented to have been offered FP counseling do not recall this discussion. Importantly, only one-third of cancer survivors had chart-documented FP counseling. Increased efforts are needed to ensure adequate follow-up beyond the initial visit.
| S-EPMC10028472 | biostudies-literature
Project description:PurposeAs the number of breast cancer survivors increases, a durable model of comprehensive survivor care is needed, incorporating providers and/or visit types both within and outside of oncology. The objective of this study was to explore survivors' comfort with different clinician types or with a telephone/Internet-based virtual visit as components of survivorship care.MethodsBreast cancer survivors participating in a general survivorship survey completed an additional breast cancer-specific questionnaire evaluating the self-perceived impact of follow-up visits to various clinician types, or follow-up by a virtual visit, on survival, worrying, and stress related to cancer.ResultsA total of 218 breast cancer survivors completed the questionnaire. Most favored medical oncologist follow-up visits over those with primary care physicians (PCPs) or nurse practitioners (NPs) in terms of reduced worrying about cancer (odds ratio [OR], 2.21; P < .001), reduced stress around the visit (OR, 1.40; P = .002), and improved effect on cancer survival (OR, 2.38; P < .001). However, the majority also displayed substantial comfort with both PCPs and NPs in the same domains. Patients rated a virtual visit as having a less favorable impact on cancer survival and cancer-related worrying compared with in-person visits with clinicians.ConclusionBreast cancer survivors are comfortable with both PCPs and NPs providing follow-up care, although they indicate a preference for medical oncologists. Given patients' negative impressions of a virtual visit, increased familiarity with and research investigating this emerging concept are needed. The NP-led survivorship clinic model, with increased guidance for PCPs, offers a promising route for improving quality of and satisfaction with survivor care.
| S-EPMC4874208 | biostudies-literature