Quality of life of patients with osteosarcoma in the european american osteosarcoma study-1 (EURAMOS-1) : Development and implementation of a questionnaire substudy
(2019) In JMIR Research Protocols 8(9).- 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... (More)
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.
(Less)
- author
- organization
- publishing date
- 2019
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- Adolescent, Cancer, Child, Observational study, Osteosarcoma, Quality of life, Sarcoma, Survivors of childhood cancer, Young adult
- in
- JMIR Research Protocols
- volume
- 8
- issue
- 9
- article number
- e14406
- publisher
- JMIR Publications Inc.
- external identifiers
-
- scopus:85095723926
- ISSN
- 1929-0748
- DOI
- 10.2196/14406
- language
- English
- LU publication?
- yes
- id
- 69e01d59-f149-41cc-9b5c-d9f0b7091271
- date added to LUP
- 2020-11-27 12:40:10
- date last changed
- 2022-04-26 22:31:32
@article{69e01d59-f149-41cc-9b5c-d9f0b7091271,
abstract = {{<p>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.</p>}},
author = {{Calaminus, Gabriele and Jenney, Meriel and Hjorth, Lars and Baust, Katja and Bernstein, Mark and Bielack, Stefan and de Vos, Patricia and Hogendoorn, Pancras C.W. and Jovic, Gordana and Krailo, Mark and Kreitz, Kiana and Marina, Neyssa and Popoola, Babasola O. and Sauerland, Cristina and Smeland, Sigbjørn and Teske, Carmen and Schweinitz, Clara V. and Whelan, Jeremy and Wiener, Andreas and Sydes, Matthew R. and Nagarajan, Rajaram}},
issn = {{1929-0748}},
keywords = {{Adolescent; Cancer; Child; Observational study; Osteosarcoma; Quality of life; Sarcoma; Survivors of childhood cancer; Young adult}},
language = {{eng}},
number = {{9}},
publisher = {{JMIR Publications Inc.}},
series = {{JMIR Research Protocols}},
title = {{Quality of life of patients with osteosarcoma in the european american osteosarcoma study-1 (EURAMOS-1) : Development and implementation of a questionnaire substudy}},
url = {{http://dx.doi.org/10.2196/14406}},
doi = {{10.2196/14406}},
volume = {{8}},
year = {{2019}},
}