Abstract
BackgroundThe 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.ObjectiveThis paper aimed to describe the QoL study development, methodology, accrual details, and characteristics of the QoL cohort.MethodsA 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.ResultsThe 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.ConclusionsThis 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.
Highlights
Treatment outcomes for patients diagnosed during adolescence and young adulthood with the most common bone sarcomas, osteosarcoma (OS), and Ewing sarcoma have improved over the past 30 years with the evidence-based introduction of intensive chemotherapy, wide-margin surgery, and, for some, radiation treatment [1,2,3,4,5]
This study demonstrates the feasibility of international cooperation for the purpose of assessing and understanding the quality of life (QoL) of pediatric and adolescent/young adult patients with cancer
Children, adolescents, and young adults diagnosed with bone sarcomas generally report lower levels of health-related quality of life (HRQoL) after surgery compared with the general population, within the domains of physical functioning and overall well-being [8,9,10]
Summary
Treatment outcomes for patients diagnosed during adolescence and young adulthood with the most common bone sarcomas, osteosarcoma (OS), and Ewing sarcoma have improved over the past 30 years with the evidence-based introduction of intensive chemotherapy, wide-margin surgery, and, for some, radiation treatment [1,2,3,4,5]. The 5-year survival rate has improved especially for patients aged younger than 25 years [6] Bone sarcomas and their treatments have a direct impact on organ function, activities of daily life, mobility, and quality of life (QoL), including emotional and physical well-being [5,7,8]. In addition to physical functioning, patients receiving treatment for a high-grade bone sarcoma show significantly poorer social functioning [8,10]. This includes lower levels of autonomy and independence when compared with matched healthy peers [8]. We report on the first prospective international QoL study that was embedded within a large randomized clinical trial from 4 national study groups
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