Development of a Health-Related Quality of Life Tool for Adolescents and Young Adults With Cancer.
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IMPORTANCE: A diagnosis of cancer during adolescence and young adulthood disrupts key developmental stages, affecting multiple domains of health-related quality of life (HRQOL). To provide a comprehensive assessment of the HRQOL issues of adolescents and young adults (AYAs) with cancer, a questionnaire dedicated to this age group is needed. OBJECTIVE: To develop an HRQOL questionnaire, as a supplement to the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30, that measures issues of relevance and importance to AYAs with cancer. DESIGN, SETTING, AND PARTICIPANTS: This survey study was informed by a systematic review of AYA oncology literature published through December 31, 2015, and interviews with AYAs with cancer and health care professionals (HCPs) between February 2015 and February 2024. Participants were recruited from 19 cancer treatment centers in Europe, Asia, and various countries. Participants included HCPs providing care to AYAs with cancer and AYAs aged 14 to 39 years who were receiving treatment for cancer, had completed treatment within the past 12 months, or were receiving palliative care. Data analysis for the survey responses was performed from May to November 2024. MAIN OUTCOMES AND MEASURES: The primary study outcome was the development of an HRQOL questionnaire that assesses issues of importance and relevance to AYAs with cancer. A draft questionnaire was created and tested for relevance and importance. Exploratory factor analysis identified questionnaire subscales. Internal consistency of items within HRQOL domains was checked using Cronbach α. RESULTS: A total of 253 AYAs (mean [SD] age, 25.5 [7.5] years; 129 males [51%]) completed the draft questionnaire, and 28 HCPs from 20 countries were also involved in this survey study. Pilot testing of the draft questionnaire resulted in a 30-item questionnaire covering 5 subscales (activity limitations and life disruptions, worry about cancer and the future, self-esteem, relationships, and positive changes) and 9 single questions. Reliability testing indicated good internal consistency, with Cronbach α ranging from 0.659 (relationships subscale) to 0.770 (positive changes subscale). Questions about distinguishing between important and nonimportant things and motivation to live life to the full were the most relevant to 89% (211 of 252) and 84% (224 of 252) of AYAs, respectively. Concerns about appearance changes and fertility were identified as priority questions by 24% (21 of 86) of AYAs. CONCLUSIONS AND RELEVANCE: In this survey study, a measurement tool was developed and tested that captures HRQOL issues of importance and relevance to AYAs from diverse cultures and with different cancer and treatment types. This HRQOL questionnaire could be a reliable and valid tool for both clinical trials and practice.