Cancer survivors who fully participate in the PROFILES registry have better health-related quality of life than those who drop out

I. Ramsey*, B. de Rooij, F. Mols, N. Corsini, N.J.E. Horevoorts, M. Eckert, L. van de Poll-Franse

*Corresponding author for this work

Research output: Contribution to journalArticleScientificpeer-review

Abstract

Purpose
Attrition and subsequent missing data pose a challenge in longitudinal research in oncology. This study examined factors associated with attrition in the PROFILES registry, and its impact on observed health-related quality of life (HRQOL) estimates.

Methods
Sociodemographic, clinical, and HRQOL data were collected annually from a cohort of 2625 colorectal cancer survivors between 2010 and 2015. Participant characteristics according to time of dropout were compared using analysis of variance and chi-square tests. Predictors of attrition were examined in logistic regression analysis. Multilevel linear mixed models were constructed to investigate associations between attrition and HRQOL over time.

Results
Participants who dropped out were more likely to be female (OR = 1.23, CI = 1.02–1.47), older (OR = 1.20, CI = 1.09–1.33), less educated (OR = 1.64, CI = 1.30–2.11), and to have depressive symptoms (OR = 1.84, CI = 1.39–2.44) than full responders, and less likely to have high socioeconomic status (OR = 0.74, CI = 0.61–0.94). Participants who dropped out earlier reported significantly worse HRQOL, functioning, and psychosocial symptoms, which declined at a steeper rate over time, than full responders.

Conclusions
Cancer survivors’ HRQOL may be overestimated in longitudinal research due to attrition of the most unwell participants.

Implications for Cancer Survivors
Cancer survivors with the poorest health are at risk of dropping out of PROFILES and possibly withdrawing from other activities. Optimizing participation in PROFILES—a potential mechanism for providing information and access to support—is an avenue for keeping this group engaged.
Original languageEnglish
Pages (from-to)829-839
JournalJournal of Cancer Survivorship
Volume13
Issue number6
DOIs
Publication statusPublished - 2019

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Survivors
Neoplasms
Access to Information
Chi-Square Distribution
Linear Models
Logistic Models
Depression

Keywords

  • ATTRITION
  • Attrition
  • BASE-LINE
  • Bias
  • COLORECTAL-CANCER
  • Cancer
  • DEPRESSION
  • Dropout
  • MISSING DATA
  • NECK-CANCER
  • PATIENT-REPORTED OUTCOMES
  • Patient-reported outcomes
  • QUESTIONNAIRE
  • Quality of life
  • SUPPORTIVE CARE
  • SYMPTOM CLUSTER
  • Survivorship

Cite this

@article{59553018c9ab48f3aab4994ff42823a8,
title = "Cancer survivors who fully participate in the PROFILES registry have better health-related quality of life than those who drop out",
abstract = "PurposeAttrition and subsequent missing data pose a challenge in longitudinal research in oncology. This study examined factors associated with attrition in the PROFILES registry, and its impact on observed health-related quality of life (HRQOL) estimates.MethodsSociodemographic, clinical, and HRQOL data were collected annually from a cohort of 2625 colorectal cancer survivors between 2010 and 2015. Participant characteristics according to time of dropout were compared using analysis of variance and chi-square tests. Predictors of attrition were examined in logistic regression analysis. Multilevel linear mixed models were constructed to investigate associations between attrition and HRQOL over time.ResultsParticipants who dropped out were more likely to be female (OR = 1.23, CI = 1.02–1.47), older (OR = 1.20, CI = 1.09–1.33), less educated (OR = 1.64, CI = 1.30–2.11), and to have depressive symptoms (OR = 1.84, CI = 1.39–2.44) than full responders, and less likely to have high socioeconomic status (OR = 0.74, CI = 0.61–0.94). Participants who dropped out earlier reported significantly worse HRQOL, functioning, and psychosocial symptoms, which declined at a steeper rate over time, than full responders.ConclusionsCancer survivors’ HRQOL may be overestimated in longitudinal research due to attrition of the most unwell participants.Implications for Cancer SurvivorsCancer survivors with the poorest health are at risk of dropping out of PROFILES and possibly withdrawing from other activities. Optimizing participation in PROFILES—a potential mechanism for providing information and access to support—is an avenue for keeping this group engaged.",
keywords = "ATTRITION, Attrition, BASE-LINE, Bias, COLORECTAL-CANCER, Cancer, DEPRESSION, Dropout, MISSING DATA, NECK-CANCER, PATIENT-REPORTED OUTCOMES, Patient-reported outcomes, QUESTIONNAIRE, Quality of life, SUPPORTIVE CARE, SYMPTOM CLUSTER, Survivorship",
author = "I. Ramsey and {de Rooij}, B. and F. Mols and N. Corsini and N.J.E. Horevoorts and M. Eckert and {van de Poll-Franse}, L.",
year = "2019",
doi = "10.1007/s11764-019-00793-7",
language = "English",
volume = "13",
pages = "829--839",
journal = "Journal of Cancer Survivorship",
issn = "1932-2259",
publisher = "Springer New York",
number = "6",

}

Cancer survivors who fully participate in the PROFILES registry have better health-related quality of life than those who drop out. / Ramsey, I.; de Rooij, B.; Mols, F.; Corsini, N.; Horevoorts, N.J.E.; Eckert, M.; van de Poll-Franse, L.

In: Journal of Cancer Survivorship, Vol. 13, No. 6, 2019, p. 829-839.

Research output: Contribution to journalArticleScientificpeer-review

TY - JOUR

T1 - Cancer survivors who fully participate in the PROFILES registry have better health-related quality of life than those who drop out

AU - Ramsey, I.

AU - de Rooij, B.

AU - Mols, F.

AU - Corsini, N.

AU - Horevoorts, N.J.E.

AU - Eckert, M.

AU - van de Poll-Franse, L.

PY - 2019

Y1 - 2019

N2 - PurposeAttrition and subsequent missing data pose a challenge in longitudinal research in oncology. This study examined factors associated with attrition in the PROFILES registry, and its impact on observed health-related quality of life (HRQOL) estimates.MethodsSociodemographic, clinical, and HRQOL data were collected annually from a cohort of 2625 colorectal cancer survivors between 2010 and 2015. Participant characteristics according to time of dropout were compared using analysis of variance and chi-square tests. Predictors of attrition were examined in logistic regression analysis. Multilevel linear mixed models were constructed to investigate associations between attrition and HRQOL over time.ResultsParticipants who dropped out were more likely to be female (OR = 1.23, CI = 1.02–1.47), older (OR = 1.20, CI = 1.09–1.33), less educated (OR = 1.64, CI = 1.30–2.11), and to have depressive symptoms (OR = 1.84, CI = 1.39–2.44) than full responders, and less likely to have high socioeconomic status (OR = 0.74, CI = 0.61–0.94). Participants who dropped out earlier reported significantly worse HRQOL, functioning, and psychosocial symptoms, which declined at a steeper rate over time, than full responders.ConclusionsCancer survivors’ HRQOL may be overestimated in longitudinal research due to attrition of the most unwell participants.Implications for Cancer SurvivorsCancer survivors with the poorest health are at risk of dropping out of PROFILES and possibly withdrawing from other activities. Optimizing participation in PROFILES—a potential mechanism for providing information and access to support—is an avenue for keeping this group engaged.

AB - PurposeAttrition and subsequent missing data pose a challenge in longitudinal research in oncology. This study examined factors associated with attrition in the PROFILES registry, and its impact on observed health-related quality of life (HRQOL) estimates.MethodsSociodemographic, clinical, and HRQOL data were collected annually from a cohort of 2625 colorectal cancer survivors between 2010 and 2015. Participant characteristics according to time of dropout were compared using analysis of variance and chi-square tests. Predictors of attrition were examined in logistic regression analysis. Multilevel linear mixed models were constructed to investigate associations between attrition and HRQOL over time.ResultsParticipants who dropped out were more likely to be female (OR = 1.23, CI = 1.02–1.47), older (OR = 1.20, CI = 1.09–1.33), less educated (OR = 1.64, CI = 1.30–2.11), and to have depressive symptoms (OR = 1.84, CI = 1.39–2.44) than full responders, and less likely to have high socioeconomic status (OR = 0.74, CI = 0.61–0.94). Participants who dropped out earlier reported significantly worse HRQOL, functioning, and psychosocial symptoms, which declined at a steeper rate over time, than full responders.ConclusionsCancer survivors’ HRQOL may be overestimated in longitudinal research due to attrition of the most unwell participants.Implications for Cancer SurvivorsCancer survivors with the poorest health are at risk of dropping out of PROFILES and possibly withdrawing from other activities. Optimizing participation in PROFILES—a potential mechanism for providing information and access to support—is an avenue for keeping this group engaged.

KW - ATTRITION

KW - Attrition

KW - BASE-LINE

KW - Bias

KW - COLORECTAL-CANCER

KW - Cancer

KW - DEPRESSION

KW - Dropout

KW - MISSING DATA

KW - NECK-CANCER

KW - PATIENT-REPORTED OUTCOMES

KW - Patient-reported outcomes

KW - QUESTIONNAIRE

KW - Quality of life

KW - SUPPORTIVE CARE

KW - SYMPTOM CLUSTER

KW - Survivorship

U2 - 10.1007/s11764-019-00793-7

DO - 10.1007/s11764-019-00793-7

M3 - Article

C2 - 31493162

VL - 13

SP - 829

EP - 839

JO - Journal of Cancer Survivorship

JF - Journal of Cancer Survivorship

SN - 1932-2259

IS - 6

ER -