Cancer survivors not participating in observational patient reported outcome studies have a lower survival compared to participants

The population-based PROFILES registry

B.H. de Rooij, N.P.M. Ezendam, F. Mols, P. Vissers, M.S.Y. Thong, C.C.P. Vlooswijk, S. Oerlemans, O. Husson, N.J.E. Horevoorts, L.V. van der Poll-Franse

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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
Original languageEnglish
Pages (from-to)3313–3324
JournalQuality of Life Research
Volume27
Issue number12
DOIs
Publication statusPublished - 2018

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Survivors
Survival Rate
Neoplasms
Netherlands
Proportional Hazards Models
Comorbidity
Logistic Models

Keywords

  • Aged
  • Aged, 80 and over
  • Cancer Survivors/statistics & numerical data
  • Female
  • Humans
  • Male
  • Middle Aged
  • Patient Reported Outcome Measures
  • Quality of Life
  • Registries
  • Surveys and Questionnaires
  • Survival Rate

Cite this

@article{e5581def21c44a7499bb6e2a85bbd400,
title = "Cancer survivors not participating in observational patient reported outcome studies have a lower survival compared to participants: The population-based PROFILES registry",
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",
keywords = "Aged, Aged, 80 and over, Cancer Survivors/statistics & numerical data, Female, Humans, Male, Middle Aged, Patient Reported Outcome Measures, Quality of Life, Registries, Surveys and Questionnaires, Survival Rate",
author = "{de Rooij}, B.H. and N.P.M. Ezendam and F. Mols and P. Vissers and M.S.Y. Thong and C.C.P. Vlooswijk and S. Oerlemans and O. Husson and N.J.E. Horevoorts and {van der Poll-Franse}, L.V.",
year = "2018",
doi = "10.1007/s11136-018-1979-0",
language = "English",
volume = "27",
pages = "3313–3324",
journal = "Quality of Life Research",
issn = "0962-9343",
publisher = "Springer",
number = "12",

}

Cancer survivors not participating in observational patient reported outcome studies have a lower survival compared to participants : The population-based PROFILES registry. / de Rooij, B.H.; Ezendam, N.P.M.; Mols, F.; Vissers, P.; Thong, M.S.Y.; Vlooswijk, C.C.P.; Oerlemans, S.; Husson, O.; Horevoorts, N.J.E.; van der Poll-Franse, L.V.

In: Quality of Life Research, Vol. 27, No. 12, 2018, p. 3313–3324.

Research output: Contribution to journalArticleScientificpeer-review

TY - JOUR

T1 - Cancer survivors not participating in observational patient reported outcome studies have a lower survival compared to participants

T2 - The population-based PROFILES registry

AU - de Rooij, B.H.

AU - Ezendam, N.P.M.

AU - Mols, F.

AU - Vissers, P.

AU - Thong, M.S.Y.

AU - Vlooswijk, C.C.P.

AU - Oerlemans, S.

AU - Husson, O.

AU - Horevoorts, N.J.E.

AU - van der Poll-Franse, L.V.

PY - 2018

Y1 - 2018

N2 - 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

AB - 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

KW - Aged

KW - Aged, 80 and over

KW - Cancer Survivors/statistics & numerical data

KW - Female

KW - Humans

KW - Male

KW - Middle Aged

KW - Patient Reported Outcome Measures

KW - Quality of Life

KW - Registries

KW - Surveys and Questionnaires

KW - Survival Rate

U2 - 10.1007/s11136-018-1979-0

DO - 10.1007/s11136-018-1979-0

M3 - Article

VL - 27

SP - 3313

EP - 3324

JO - Quality of Life Research

JF - Quality of Life Research

SN - 0962-9343

IS - 12

ER -