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Incorporating the patient voice in sarcoma research: How can we assess health-related quality of life in this heterogeneous group of patients? ; A study protocol

Sarcomas comprise 1% of adult tumors and are very heterogeneous. Long-lasting and cumulative treatment side-effects detract from the (progression-free) survival benefit of treatment. Therefore, it is important to assess treatment effectiveness in terms of patient-reported outcomes (PROs), including...

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Main Authors: Hollander, Dide den (Author) , Fiore, Marco (Author) , Martin-Broto, Javier (Author) , Kasper, Bernd (Author) , Casado Herraez, Antonio (Author) , Kulis, Dagmara (Author) , Nixon, Ioanna (Author) , Sodergren, Samantha C. (Author) , Eichler, Martin (Author) , van Houdt, Winan J. (Author) , Desar, Ingrid M. E. (Author) , Ray-Coquard, Isabelle (Author) , Piccinin, Claire (Author) , Kosela-Paterczyk, Hanna (Author) , Miah, Aisha (Author) , Hentschel, Leopold (Author) , Singer, Susanne (Author) , Wilson, Roger (Author) , Graaf, Wilhelmina Tita Alide van der (Author) , Husson, Olga (Author)
Format: Article (Journal)
Language:English
Published: 2021
In: Cancers
Year: 2021, Volume: 13, Issue: 1, Pages: 1-14
ISSN:2072-6694
DOI:10.3390/cancers13010001
Online Access:Verlag, lizenzpflichtig, Volltext: https://doi.org/10.3390/cancers13010001
Verlag, lizenzpflichtig, Volltext: https://www.mdpi.com/2072-6694/13/1/1
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Author Notes:Dide den Hollander, Marco Fiore, Javier Martin-Broto, Bernd Kasper, Antonio Casado Herraez, Dagmara Kulis, Ioanna Nixon, Samantha C. Sodergren, Martin Eichler, Winan J. van Houdt, Ingrid M. E. Desar, Isabelle Ray-Coquard, Claire Piccinin, Hanna Kosela-Paterczyk, Aisha Miah, Leopold Hentschel, Susanne Singer, Roger Wilson, Winette T. A. van der Graaf and Olga Husson
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Summary:Sarcomas comprise 1% of adult tumors and are very heterogeneous. Long-lasting and cumulative treatment side-effects detract from the (progression-free) survival benefit of treatment. Therefore, it is important to assess treatment effectiveness in terms of patient-reported outcomes (PROs), including health-related quality of life (HRQoL) as well. However, questionnaires capturing the unique issues of sarcoma patients are currently lacking. Given the heterogeneity of the disease, the development of such an instrument may be challenging. The study aims to (1) develop an exhaustive list of all HRQoL issues relevant to sarcoma patients and determine content validity; (2) determine a strategy for HRQoL measurement in sarcoma patients. We will conduct an international, multicenter, mixed-methods study (registered at clinicaltrials.gov: NCT04071704) among bone or soft tissue sarcoma patients ≥18 years, using EORTC Quality of Life Group questionnaire development guidelines. First, an exhaustive list of HRQoL issues will be generated, derived from literature and patient (n = 154) and healthcare professional (HCP) interviews (n = 30). Subsequently, another group of sarcoma patients (n = 475) and HCPs (n = 30) will be asked to rate and prioritize the issues. Responses will be analyzed by priority, prevalence and range of responses for each item. The outcome will be a framework for tailored HRQoL measurement in sarcoma patients, taking into account sociodemographic and clinical variables.
Item Description:Published: 22 December 2020
Gesehen am 21.06.2021
Physical Description:Online Resource
ISSN:2072-6694
DOI:10.3390/cancers13010001

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