Abstract
PurposeThe ‘Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship’ (PROFILES) registry collects patient-reported outcomes (PROs) from short- and long-term cancer survivors in the Netherlands, in a population-based setting. The aim of this analysis is to assess the generalizability of observational PRO research among cancer survivors by comparing socio-demographic and clinical characteristics, and survival of participants and non-participants in cancer survivors invited for questionnaire research through the PROFILES registry.MethodsBetween 2008 and 2015, cancer survivors with different cancer diagnoses (N = 14,011) were invited to participate in PROFILES registry studies, of whom 69% (N = 9684) participated. Socio-demographic and clinical characteristics and survival data, collected through the Netherlands Cancer Registry, were associated with participation versus non-participation in multivariable logistic regression analyses and cox proportional hazard regression models, respectively.ResultsParticipants had a significantly better survival compared to non-participants (HR = 1.47, P < .01). Participation was associated with male gender, being 60–70 years old, high socio-economic status, receiving any treatment, receiving radiotherapy, having no comorbidities, and a cancer diagnosis 2–3 years before invitation. Sensitivity analysis demonstrates that the health-related quality of life (HRQoL) might be up to 1.3 points lower (scale 0–100) using hot deck imputation compared to non-imputed participant data.ConclusionsCancer survivors not participating in observational PROs research significantly differ from participants, with respect to socio-demographic and clinical characteristics, and survival. Their HRQoL scores may be systematically lower compared to participants. Therefore, even in PRO studies with relatively high participation rates, observed outcomes may represent the healthier patient with better outcomes.
Highlights
Patient-reported outcomes (PROs) are increasingly being used in patient-centered outcome research to support informed health care decisions [1]
If certain patients are underrepresented in PRO research, the generalizability of the outcomes are likely to be affected, which may in turn negatively impact the usability in informed decision making [3, 4]
Complete and comprehensive supplemental data on socio-demographics, clinical characteristics, and survival are available for the full population of participants, as well as for the non-participants, through the Netherlands Cancer Registry (NCR) and linkage with the Dutch municipal personal records database
Summary
Patient-reported outcomes (PROs) are increasingly being used in patient-centered outcome research to support informed health care decisions [1]. If certain patients are underrepresented in PRO research, the generalizability of the outcomes are likely to be affected, which may in turn negatively impact the usability in (shared) informed decision making [3, 4]. The ‘Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship’ (PROFILES ) registry is a large and dynamic populationbased cohort for the study of the physical and psychosocial impact of cancer and its treatment [7]. Since 2008, the PROFILES registry has been used to collect PROs among both short- and long-term cancer survivors in observational population-based studies in the Netherlands. Complete and comprehensive supplemental data on socio-demographics, clinical characteristics, and survival are available for the full population of participants, as well as for the non-participants, through the Netherlands Cancer Registry (NCR) and linkage with the Dutch municipal personal records database
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