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Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes

SIMPLE SUMMARY: Desmoid-type fibromatosis (DTF) is an uncommon, non-metastasising soft-tissue tumour. Patients can experience a wide variety of disease-specific issues related to the unpredictable clinical course and aggressiveness of DTF, negatively impacting their health-related quality of life (H...

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Autores principales: Schut, Anne-Rose W., Lidington, Emma, Timbergen, Milea J. M., Younger, Eugenie, van der Graaf, Winette T. A., van Houdt, Winan J., Bonenkamp, Johannes J., Jones, Robin L., Grünhagen, Dirk. J., Sleijfer, Stefan, Verhoef, Cornelis, Gennatas, Spyridon, Husson, Olga
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9221474/
https://www.ncbi.nlm.nih.gov/pubmed/35740642
http://dx.doi.org/10.3390/cancers14122979
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author Schut, Anne-Rose W.
Lidington, Emma
Timbergen, Milea J. M.
Younger, Eugenie
van der Graaf, Winette T. A.
van Houdt, Winan J.
Bonenkamp, Johannes J.
Jones, Robin L.
Grünhagen, Dirk. J.
Sleijfer, Stefan
Verhoef, Cornelis
Gennatas, Spyridon
Husson, Olga
author_facet Schut, Anne-Rose W.
Lidington, Emma
Timbergen, Milea J. M.
Younger, Eugenie
van der Graaf, Winette T. A.
van Houdt, Winan J.
Bonenkamp, Johannes J.
Jones, Robin L.
Grünhagen, Dirk. J.
Sleijfer, Stefan
Verhoef, Cornelis
Gennatas, Spyridon
Husson, Olga
author_sort Schut, Anne-Rose W.
collection PubMed
description SIMPLE SUMMARY: Desmoid-type fibromatosis (DTF) is an uncommon, non-metastasising soft-tissue tumour. Patients can experience a wide variety of disease-specific issues related to the unpredictable clinical course and aggressiveness of DTF, negatively impacting their health-related quality of life (HRQoL). Little is known about which DTF patients are particularly affected by an impaired HRQoL. In the current study, HRQoL was evaluated among different groups of DTF patients, using the EORTC QLQ-C30 and the DTF-QoL, a DTF-specific HRQoL questionnaire. Age, sex, presence of comorbidities, and type of treatment were found to be most strongly associated with DTF-specific HRQoL outcomes. In general, socio-demographic factors had the greatest impact on generic HRQoL, whereas the influence of clinical factors was mainly seen on the DTF-QoL, underlining the importance of a disease-specific questionnaire. Knowledge of the differences in DTF-specific HRQoL between subgroups can be used to individualize the HRQoL-measurement strategy for research and clinical practice. ABSTRACT: Desmoid-type fibromatosis (DTF) is a rare, soft-tissue tumour. These tumours do not metastasize, but their local aggressive tumour growth and unpredictable behaviour can have a significant impact on health-related quality of life (HRQoL). Little is known about which DTF patients are particularly affected by an impaired HRQoL. The objectives of this study were to assess HRQoL among different groups of DTF patients and to investigate which socio-demographic and clinical characteristics were associated with DTF-specific HRQoL. A cross-sectional study was conducted among DTF patients from the United Kingdom and the Netherlands. HRQoL was assessed using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30), accompanied by the DTF-QoL to assess DTF-specific HRQoL. The scores were compared amongst subgroups, based on the socio-demographic and clinical characteristics of DTF patients. Multiple linear regression analyses with a backward elimination were conducted to identify the factors associated with DTF-specific HRQoL. A total of 235 DTF patients completed the questionnaires. Female patients, patients with more than two comorbidities, or patients who received treatment other than only active surveillance (AS) or surgery scored significantly worse on the subscales of both the EORTC QLQ-C30 and DTF-QoL. Patients that were ≥ 40 years scored significantly worse on the physical functioning scale of the EORTC QLQ-C30, while younger patients (18–39 years) scored significantly worse on several DTF-QoL subscales. Differences in the DTF-QoL subscales were found for tumour location, time since diagnosis and the presence of recurrent disease. Furthermore, treatments other than AS or surgery only, female sex, younger age and the presence of comorbidities were most frequently associated with worse scores on the DTF-QoL subscales. This study showed that (DTF-specific) HRQoL differs between groups of DTF patients. Awareness of these HRQoL differences could help to provide better, personalised care that is tailored to the needs of a specific subgroup.
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spelling pubmed-92214742022-06-24 Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes Schut, Anne-Rose W. Lidington, Emma Timbergen, Milea J. M. Younger, Eugenie van der Graaf, Winette T. A. van Houdt, Winan J. Bonenkamp, Johannes J. Jones, Robin L. Grünhagen, Dirk. J. Sleijfer, Stefan Verhoef, Cornelis Gennatas, Spyridon Husson, Olga Cancers (Basel) Article SIMPLE SUMMARY: Desmoid-type fibromatosis (DTF) is an uncommon, non-metastasising soft-tissue tumour. Patients can experience a wide variety of disease-specific issues related to the unpredictable clinical course and aggressiveness of DTF, negatively impacting their health-related quality of life (HRQoL). Little is known about which DTF patients are particularly affected by an impaired HRQoL. In the current study, HRQoL was evaluated among different groups of DTF patients, using the EORTC QLQ-C30 and the DTF-QoL, a DTF-specific HRQoL questionnaire. Age, sex, presence of comorbidities, and type of treatment were found to be most strongly associated with DTF-specific HRQoL outcomes. In general, socio-demographic factors had the greatest impact on generic HRQoL, whereas the influence of clinical factors was mainly seen on the DTF-QoL, underlining the importance of a disease-specific questionnaire. Knowledge of the differences in DTF-specific HRQoL between subgroups can be used to individualize the HRQoL-measurement strategy for research and clinical practice. ABSTRACT: Desmoid-type fibromatosis (DTF) is a rare, soft-tissue tumour. These tumours do not metastasize, but their local aggressive tumour growth and unpredictable behaviour can have a significant impact on health-related quality of life (HRQoL). Little is known about which DTF patients are particularly affected by an impaired HRQoL. The objectives of this study were to assess HRQoL among different groups of DTF patients and to investigate which socio-demographic and clinical characteristics were associated with DTF-specific HRQoL. A cross-sectional study was conducted among DTF patients from the United Kingdom and the Netherlands. HRQoL was assessed using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30), accompanied by the DTF-QoL to assess DTF-specific HRQoL. The scores were compared amongst subgroups, based on the socio-demographic and clinical characteristics of DTF patients. Multiple linear regression analyses with a backward elimination were conducted to identify the factors associated with DTF-specific HRQoL. A total of 235 DTF patients completed the questionnaires. Female patients, patients with more than two comorbidities, or patients who received treatment other than only active surveillance (AS) or surgery scored significantly worse on the subscales of both the EORTC QLQ-C30 and DTF-QoL. Patients that were ≥ 40 years scored significantly worse on the physical functioning scale of the EORTC QLQ-C30, while younger patients (18–39 years) scored significantly worse on several DTF-QoL subscales. Differences in the DTF-QoL subscales were found for tumour location, time since diagnosis and the presence of recurrent disease. Furthermore, treatments other than AS or surgery only, female sex, younger age and the presence of comorbidities were most frequently associated with worse scores on the DTF-QoL subscales. This study showed that (DTF-specific) HRQoL differs between groups of DTF patients. Awareness of these HRQoL differences could help to provide better, personalised care that is tailored to the needs of a specific subgroup. MDPI 2022-06-16 /pmc/articles/PMC9221474/ /pubmed/35740642 http://dx.doi.org/10.3390/cancers14122979 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Schut, Anne-Rose W.
Lidington, Emma
Timbergen, Milea J. M.
Younger, Eugenie
van der Graaf, Winette T. A.
van Houdt, Winan J.
Bonenkamp, Johannes J.
Jones, Robin L.
Grünhagen, Dirk. J.
Sleijfer, Stefan
Verhoef, Cornelis
Gennatas, Spyridon
Husson, Olga
Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes
title Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes
title_full Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes
title_fullStr Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes
title_full_unstemmed Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes
title_short Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes
title_sort unraveling desmoid-type fibromatosis-specific health-related quality of life: who is at risk for poor outcomes
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9221474/
https://www.ncbi.nlm.nih.gov/pubmed/35740642
http://dx.doi.org/10.3390/cancers14122979
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