Format

Send to

Choose Destination
Qual Life Res. 2018 Dec;27(12):3313-3324. doi: 10.1007/s11136-018-1979-0. Epub 2018 Aug 30.

Cancer survivors not participating in observational patient-reported outcome studies have a lower survival compared to participants: the population-based PROFILES registry.

Author information

1
Department of Medical and Clinical Psychology, CoRPS - Center of Research on Psychology in Somatic Diseases, Tilburg University, Warandelaan 2, PO Box 90153, 5000 LE, Tilburg, The Netherlands. b.h.derooij@uvt.nl.
2
The Netherlands Comprehensive Cancer Organisation, Utrecht, The Netherlands. b.h.derooij@uvt.nl.
3
Department of Medical and Clinical Psychology, CoRPS - Center of Research on Psychology in Somatic Diseases, Tilburg University, Warandelaan 2, PO Box 90153, 5000 LE, Tilburg, The Netherlands.
4
The Netherlands Comprehensive Cancer Organisation, Utrecht, The Netherlands.
5
Department of Medical Psychology, Academic Medical Center University of Amsterdam, Amsterdam Public Health Research Institute, Amsterdam, The Netherlands.
6
Department of Medical Psychology, Radboud University Medical Center, Nijmegen, The Netherlands.
7
Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Amsterdam, The Netherlands.

Abstract

PURPOSE:

The '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.

METHODS:

Between 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.

RESULTS:

Participants 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.

CONCLUSIONS:

Cancer 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.

KEYWORDS:

Cancer survivors; Non-participation; Non-response bias; Patient-reported outcomes; Quality of life

PMID:
30167937
PMCID:
PMC6244797
DOI:
10.1007/s11136-018-1979-0
[Indexed for MEDLINE]
Free PMC Article

Supplemental Content

Full text links

Icon for Springer Icon for PubMed Central
Loading ...
Support Center