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

Research output: Contribution to journalResearch articleContributedpeer-review

Contributors

  • Dide Den Hollander - , Netherlands Cancer Institute, Radboud University Nijmegen (Author)
  • Marco Fiore - , IRCCS Fondazione Istituto Nazionale per lo studio e la cura dei tumori - Milano (Author)
  • Javier Martin-Broto - , Hospital Universitario Virgen del Rocio (Author)
  • Bernd Kasper - , Heidelberg University  (Author)
  • Antonio Casado Herraez - , Complutense University (Author)
  • Dagmara Kulis - , European Organisation for Research and Treatment of Cancer Data Center (Author)
  • Ioanna Nixon - , University of Glasgow (Author)
  • Samantha C. Sodergren - , University of Southampton (Author)
  • Martin Eichler - , University Cancer Centre Dresden, TUD Dresden University of Technology (Author)
  • Winan J. van Houdt - , Netherlands Cancer Institute (Author)
  • Ingrid M.E. Desar - , Radboud University Nijmegen (Author)
  • Isabelle Ray-Coquard - , Universite Claude Bernard Lyon 1 (Author)
  • Claire Piccinin - , European Organisation for Research and Treatment of Cancer Data Center (Author)
  • Hanna Kosela-Paterczyk - , Maria Sklodowska-Curie Institute of Oncology (Author)
  • Aisha Miah - , Royal Marsden NHS Foundation Trust (Author)
  • Leopold Hentschel - , University Cancer Centre Dresden, TUD Dresden University of Technology (Author)
  • Susanne Singer - , Johannes Gutenberg University Mainz (Author)
  • Roger Wilson - , Sarcoma Patients EuroNet (Author)
  • Winette T.A. van der Graaf - , Netherlands Cancer Institute, Erasmus University Rotterdam (Author)
  • Olga Husson - , Netherlands Cancer Institute, Institute of Cancer Research (Author)

Abstract

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.

Details

Original languageEnglish
Article number1
Pages (from-to)1-14
Number of pages14
JournalCancers
Volume13
Issue number1
Publication statusPublished - Jan 2021
Peer-reviewedYes

External IDs

ORCID /0000-0001-9654-2207/work/142254146

Keywords

Sustainable Development Goals

ASJC Scopus subject areas

Keywords

  • Bone sarcoma, Health-related quality of life, Patient-reported outcomes, Sarcomas, Soft tissue sarcoma