RT Journal Article
T1 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.
A1 den Hollander, Dide
A1 Fiore, Marco
A1 Martin-Broto, Javier
A1 Kasper, Bernd
A1 Casado Herraez, Antonio
A1 Kulis, Dagmara
A1 Nixon, Ioanna
A1 Sodergren, Samantha C
A1 Eichler, Martin
A1 van Houdt, Winan J
A1 Desar, Ingrid M E
A1 Ray-Coquard, Isabelle
A1 Piccinin, Claire
A1 Kosela-Paterczyk, Hanna
A1 Miah, Aisha
A1 Hentschel, Leopold
A1 Singer, Susanne
A1 Wilson, Roger
A1 van der Graaf, Winette T A
A1 Husson, Olga
K1 bone sarcoma
K1 health-related quality of life
K1 patient-reported outcomes
K1 sarcomas
K1 soft tissue sarcoma
AB 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.
SN 2072-6694
YR 2020
FD 2020-12-22
LK http://hdl.handle.net/10668/17128
UL http://hdl.handle.net/10668/17128
LA en
DS RISalud
RD Apr 9, 2025