Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study

Abstract

Background: Participation 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. Methods: A 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. Results: In 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%). Conclusion: Study 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.

Learning from long‐term adolescent and young adult (AYA) cancer survivors regarding their age‐specific care needs to improve current AYA care programs

“…AYAs without a need or who did not know if they have had a need, expressed that they were unfamiliar with the term “age‐specific (AYA) care,” which makes it difficult to answer the question with either yes or no, and whether they received age‐specific care. Secondly, although the response rate of 35.3% is in line with previous studies, it shows that we miss the input of quite some AYAs who did not participate, which reduces generalizability 24 . Lastly, due to the cross‐sectional design of this study, no conclusions could be drawn on possible changes in need for age‐specific care over time and per phase of the cancer continuum, including diagnosis, treatment, follow‐up, and survivorship.…”

“…PROFILES is a registry to study the impact of cancer (treatment) from a population‐based cohort of survivors 26 . After signing the informed consent form, the questionnaire could be completed either online or on paper 24 . After completion, the questionnaire data were linked to the clinical data of the NCR to finalize the dataset.…”

“…The main aim of the retrospective, observational cohort study was to examine the prevalence, risk factors, and mechanisms of impaired health outcomes among a population‐based sample of AYA cancer survivors (Clinical trials registration: NCT05379387) 23 . A detailed description of the methods used in the SURVAYA study has been reported previously 24 . In short, all AYA cancer survivors diagnosed with their first invasive tumor between 1999 and 2015, at the age of 18–39 years, in one of the nine participating cancer centers, were selected from the Netherlands Cancer Registry (NCR).…”

A Negative Body Image among Adolescent and Young Adult (AYA) Cancer Survivors: Results from the Population-Based SURVAYA Study

“…The cancer-generic tools made it impossible to compare our data on the prevalence of body image problems to the general population, leaving it unknown whether part of the body image problems might be caused by the specific life stage of AYAs. More general limitations of the SURVAYA study have previously been described [ 25 ].…”

“…The NCR routinely collects data on tumor characteristics and patients’ background characteristics at the primary diagnosis. Details on data collection for the SURVAYA study have previously been described [ 25 ].…”