Development of a health-related quality of life tool for adolescents and young adults with cancer

Abstract

Importance: a diagnosis of cancer during adolescence and young adulthood (AYA) disrupts key developmental stages impacting multiple domains of health-related quality of life (HRQoL). To provide a comprehensive assessment of the HRQoL issues of AYAs, a questionnaire dedicated to this age group is needed.

Objective: develop a European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group (QLG) questionnaire measuring HRQoL issues of relevance and importance to AYAs aged 14-39 years with cancer to supplement the cancer generic measure, EORTC QLQ-C30.

Design: this survey study was informed by a systematic review of AYA oncology literature published up until 2015 and interviews with AYAs with cancer and health care professionals (HCPs) between 2015-2024. A draft questionnaire was created and tested for relevance and importance. Exploratory Factor Analysis (EFA) identified questionnaire sub-scales. Internal consistency of items within domains was checked using Cronbach's alpha.

Setting: participants were recruited from cancer treatment centres across multiple countries.

Participants: participants included HCPs and AYAs (14-39 years) receiving treatment for cancer, completed treatment within the past 12 months or receiving palliative care.

Main outcome; the primary study outcome was the development of a HRQoL questionnaire assessing issues of importance and relevance to AYAs with cancer.

Results: a total of 365 AYAs aged 14-39 years and 28 HCPs from 20 countries were involved in this survey study. Pilot testing of the draft questionnaire resulted in a 30-item questionnaire covering five sub-scales: Activity limitations, Worry about cancer and the future, Self-esteem, Relationships and Positive outlook, and nine single questions. Reliability testing indicated good internal consistency (Cronbach’s alpha range between 0.66 and 0.77). Questions about re-evaluation of priorities and motivation to live life to the full were the most relevant (89% and 84% of AYAs respectively). Concerns about appearance changes and fertility were identified as priority questions (24% AYAs).

Conclusion: in this survey study of the HRQoL issues experienced by AYAs with cancer we developed and tested the EORTC QLQ-AYA30 ,a cross-cultural, comprehensive, acceptable, and reliable assessment of HRQoL for use in clinical practice, trials, and research. Future international validation work will further test the QLQ-AYA30.

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Identifiers

ORCID for Samantha Claire Sodergren: orcid.org/0000-0001-8755-146X

ORCID for Jamal Hossain: orcid.org/0000-0002-2728-1055

ORCID for Anne-Sophie Darlington: orcid.org/0000-0003-4387-7278

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