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Cancer survivors who fully participate in the PROFILES registry have better health-related quality of life than those who drop out
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...
Autores principales: | , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Springer US
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6881419/ https://www.ncbi.nlm.nih.gov/pubmed/31493162 http://dx.doi.org/10.1007/s11764-019-00793-7 |
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author | Ramsey, Imogen de Rooij, Belle H. Mols, Floortje Corsini, Nadia Horevoorts, Nicole J. E. Eckert, Marion van de Poll-Franse, Lonneke V. |
author_facet | Ramsey, Imogen de Rooij, Belle H. Mols, Floortje Corsini, Nadia Horevoorts, Nicole J. E. Eckert, Marion van de Poll-Franse, Lonneke V. |
author_sort | Ramsey, Imogen |
collection | PubMed |
description | 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. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s11764-019-00793-7) contains supplementary material, which is available to authorized users. |
format | Online Article Text |
id | pubmed-6881419 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | Springer US |
record_format | MEDLINE/PubMed |
spelling | pubmed-68814192019-12-12 Cancer survivors who fully participate in the PROFILES registry have better health-related quality of life than those who drop out Ramsey, Imogen de Rooij, Belle H. Mols, Floortje Corsini, Nadia Horevoorts, Nicole J. E. Eckert, Marion van de Poll-Franse, Lonneke V. J Cancer Surviv Article 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. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s11764-019-00793-7) contains supplementary material, which is available to authorized users. Springer US 2019-09-06 2019 /pmc/articles/PMC6881419/ /pubmed/31493162 http://dx.doi.org/10.1007/s11764-019-00793-7 Text en © The Author(s) 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. |
spellingShingle | Article Ramsey, Imogen de Rooij, Belle H. Mols, Floortje Corsini, Nadia Horevoorts, Nicole J. E. Eckert, Marion van de Poll-Franse, Lonneke V. Cancer survivors who fully participate in the PROFILES registry have better health-related quality of life than those who drop out |
title | Cancer survivors who fully participate in the PROFILES registry have better health-related quality of life than those who drop out |
title_full | Cancer survivors who fully participate in the PROFILES registry have better health-related quality of life than those who drop out |
title_fullStr | Cancer survivors who fully participate in the PROFILES registry have better health-related quality of life than those who drop out |
title_full_unstemmed | Cancer survivors who fully participate in the PROFILES registry have better health-related quality of life than those who drop out |
title_short | Cancer survivors who fully participate in the PROFILES registry have better health-related quality of life than those who drop out |
title_sort | cancer survivors who fully participate in the profiles registry have better health-related quality of life than those who drop out |
topic | Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6881419/ https://www.ncbi.nlm.nih.gov/pubmed/31493162 http://dx.doi.org/10.1007/s11764-019-00793-7 |
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