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The Health-Related Quality of Life of Sarcoma Patients and Survivors in Germany—Cross-Sectional Results of a Nationwide Observational Study (PROSa)
Study Protocol

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

1
Department of Medical Oncology, Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands
2
Department of Medical Oncology, Radboud University Medical Centre, 6525 GA Nijmegen, The Netherlands
3
Department of Surgery, Fondazione IRCCS Istituto Nazionale dei Tumori, 20133 Milan, Italy
4
Department of Medical Oncology, Virgen del Rocío University Hospital, 41013 Sevilla, Spain
5
Sarcoma Unit, University of Heidelberg, Mannheim University Medical Center, 68167 Mannheim, Germany
6
Department of Medical Oncology, Hospital Clínico San Carlos, 28040 Madrid, Spain
7
Quality of Life Department, European Organisation for Research and Treatment of Cancer, 1200 Brussels, Belgium
8
Department of Clinical Oncology, The Beatson Cancer Center, Glasgow G12 0YN, UK
9
School of Health Sciences, University of Southampton, Southampton SO17 1BJ, UK
10
University Cancer Center (NCT/UCC), University Hospital Carl Gustav Carus, Technical University Dresden, 01069 Dresden, Germany
11
Department of Surgical Oncology, Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands
12
HESPER Lab, Department of Medical Oncology, Centre Léon-Bérard, University Claude Bernard Lyon, 69008 Lyon, France
13
Department of Medical Oncology, Maria Sklodowska-Curie Memorial Cancer Center and Institute of Oncology, 02-034 Warsaw, Poland
14
Department of Clinical Oncology, Royal Marsden NHS Foundation Trust, London SW3 6JJ, UK
15
Epidemiology and Informatics, Institute of Medical Biostatistics, University Medical Centre Mainz, 55131 Mainz, Germany
16
University Cancer Centre Mainz (UCT), University Medical Centre Mainz, 55131 Mainz, Germany
17
Sarcoma Patients EuroNet, D-85521 Riemerling, Germany
18
Department of Medical Oncology, ErasmusMC Cancer Institute, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands
19
Division of Clinical Studies, Institute of Cancer Research, London SM2 5NG, UK
*
Author to whom correspondence should be addressed.
These authors share last authorship.
Cancers 2021, 13(1), 1; https://doi.org/10.3390/cancers13010001
Received: 24 November 2020 / Revised: 17 December 2020 / Accepted: 18 December 2020 / Published: 22 December 2020
(This article belongs to the Special Issue New Directions for Treating Soft Tissue Sarcomas)
Sarcomas are a rare group of heterogeneous tumors. Because treatment side-effects detract from the survival benefit of treatment, it is important to assess treatment effectiveness in terms of patient-reported health-related quality of life (HRQoL). However, a sarcoma specific measurement instrument or strategy does currently not exist. This study aims to (1) develop a list of all HRQoL issues relevant to sarcoma patients; (2) determine a strategy for sarcoma-specific HRQoL assessment. An international, multicenter study will be conducted, searching existing literature and conducting interviews with adult sarcoma patients and healthcare professionals (HCPs) to create a list of HRQoL issues. Subsequently, another group of sarcoma patients and HCPs will be asked to rate and prioritize the issues. This information will help create a strategy to measure HRQoL in sarcoma patients, taking into account the heterogeneity of sarcomas, which will improve the collection of personalized patient-reported outcome data in future research and clinical care.
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. View Full-Text
Keywords: sarcomas; soft tissue sarcoma; bone sarcoma; health-related quality of life; patient-reported outcomes sarcomas; soft tissue sarcoma; bone sarcoma; health-related quality of life; patient-reported outcomes
MDPI and ACS Style

den Hollander, D.; Fiore, M.; Martin-Broto, J.; Kasper, B.; Casado Herraez, A.; Kulis, D.; Nixon, I.; Sodergren, S.C.; Eichler, M.; van Houdt, W.J.; Desar, I.M.E.; Ray-Coquard, I.; Piccinin, C.; Kosela-Paterczyk, H.; Miah, A.; Hentschel, L.; Singer, S.; Wilson, R.; van der Graaf, W.T.A.; Husson, O. 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. Cancers 2021, 13, 1. https://doi.org/10.3390/cancers13010001

AMA Style

den Hollander D, Fiore M, Martin-Broto J, Kasper B, Casado Herraez A, Kulis D, Nixon I, Sodergren SC, Eichler M, van Houdt WJ, Desar IME, Ray-Coquard I, Piccinin C, Kosela-Paterczyk H, Miah A, Hentschel L, Singer S, Wilson R, van der Graaf WTA, Husson O. 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. Cancers. 2021; 13(1):1. https://doi.org/10.3390/cancers13010001

Chicago/Turabian Style

den Hollander, Dide; Fiore, Marco; Martin-Broto, Javier; Kasper, Bernd; Casado Herraez, Antonio; Kulis, Dagmara; Nixon, Ioanna; Sodergren, Samantha C.; Eichler, Martin; van Houdt, Winan J.; Desar, Ingrid M.E.; Ray-Coquard, Isabelle; Piccinin, Claire; Kosela-Paterczyk, Hanna; Miah, Aisha; Hentschel, Leopold; Singer, Susanne; Wilson, Roger; van der Graaf, Winette T.A.; Husson, Olga. 2021. "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" Cancers 13, no. 1: 1. https://doi.org/10.3390/cancers13010001

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