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Quality of Life of Patients With Osteosarcoma in the European American Osteosarcoma Study-1 (EURAMOS-1): Development and Implementation of a Questionnaire Substudy

Calaminus, G; Jenney, M; Hjorth, L; Baust, K; Bernstein, M; Bielack, S; Vos, PD; ... Nagarajan, R; + view all (2019) Quality of Life of Patients With Osteosarcoma in the European American Osteosarcoma Study-1 (EURAMOS-1): Development and Implementation of a Questionnaire Substudy. JMIR Research Protocols , 8 (9) , Article e14406. 10.2196/14406. Green open access

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Abstract

BACKGROUND: The quality of life (QoL) of patients with osteosarcoma (OS) may be adversely affected by the disease or its treatment. Therefore, it is important to understand the QoL of patients undergoing treatment for OS to improve the QoL. We report on the first prospective international QoL study that was embedded within a large randomized clinical trial from 4 national study groups. OBJECTIVE: This paper aimed to describe the QoL study development, methodology, accrual details, and characteristics of the QoL cohort. METHODS: A total of 2260 patients registered in the EURopean AMerican Osteosarcoma Study-1 (EURAMOS-1), of whom 97.92% (2213/2260) were eligible for the optional QoL assessment and could participate in terms of questionnaire availability. Overall, 61.86% (1369/2213) of patients and/or proxies completed the QoL evaluation at the first assessment time point (E1) after the start of preoperative treatment. The QoL measures used (self- and/or proxy reports) depending on the patient's age and national study group. Participants and nonparticipants in the ancillary QoL study were compared regarding relevant demographic and disease-related characteristics at registration in the trial. RESULTS: The participation rate at time point E1 did not differ with regard to age, gender, the occurrence of pathological fracture, or the presence of any metastases at diagnosis. No differences were found regarding the primary tumor site. Only the national study group affiliation had an influence on participation. Participation decreased linearly with trial progress up to 20% at the final time point of QoL assessment. CONCLUSIONS: This study demonstrates the feasibility of international cooperation for the purpose of assessing and understanding the QoL of pediatric and adolescent/young adult patients with cancer. Future outcomes of this QoL substudy will help to adapt interventions to improve QoL.

Type: Article
Title: Quality of Life of Patients With Osteosarcoma in the European American Osteosarcoma Study-1 (EURAMOS-1): Development and Implementation of a Questionnaire Substudy
Location: Canada
Open access status: An open access version is available from UCL Discovery
DOI: 10.2196/14406
Publisher version: https://doi.org/10.2196/14406
Language: English
Additional information: ©Gabriele Calaminus, Meriel Jenney, Lars Hjorth, Katja Baust, Mark Bernstein, Stefan Bielack, Patricia De Vos, Pancras C W Hogendoorn, Gordana Jovic, Mark Krailo, Kiana Kreitz, Neyssa Marina, Babasola O Popoola, Cristina Sauerland, Sigbjørn Smeland, Carmen Teske, Clara V Schweinitz, Jeremy Whelan, Andreas Wiener, Matthew R Sydes, Rajaram Nagarajan. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 26.09.2019 This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on http://www.researchprotocols.org, as well as this copyright and license information must be included.
Keywords: adolescent, cancer, child, observational study, osteosarcoma, quality of life, sarcoma, survivors of childhood cancer, young adult
UCL classification: UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Cancer Institute
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Cancer Institute > Research Department of Oncology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Pop Health Sciences > Inst of Clinical Trials and Methodology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Pop Health Sciences > Inst of Clinical Trials and Methodology > MRC Clinical Trials Unit at UCL
URI: https://discovery.ucl.ac.uk/id/eprint/10082416
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