The first comprehensive, cross-cultural, cancer-specific health-related quality-of-life (HRQOL) questionnaire for adolescents and young adults (AYAs) aged 14–39 years has been developed by a multinational research consortium.

Conducted on behalf of the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group, the study aimed to develop a HRQOL questionnaire that complemented the EORTC QLQ-C30 – a 30-item instrument designed to measure QoL in all cancer patients – but addressing issues specifically relevant to AYAs with cancer.

Establishing HRQOL issues in AYA with cancer

Across the three-phase study, 365 AYAs and 28 HCPs contributed to the development of the new QLQ-AYA30 tool.

Phase 1 comprised a systematic review of AYA oncology literature and interviews with 45 AYAs (mean age 20.3 years; 53% male) from 10 countries. Leukaemia (28%) and lymphoma (18%) were the most common of the 12 cancer types presented, and most participants (78%) were receiving treatment with curative intent.

The interviews discussed how their lives had changed since their diagnosis and considered HRQOL issues extracted from the literature review and QLQ-C30 to determine the issues most widely experienced by the AYAs.

HCPs from six countries commented on the HRQOL issues experienced by AYAs they treated and an exhaustive list of HRQOL issues was then created, with further AYA and HCP input, with Phase 2 involving the drafting of the 50-item questionnaire, which was then translated into 17 languages.

Refining the QLQ-AYA30 questionnaire

Phase 3 pilot testing involved 253 AYAs (mean age 25.5 years; 51% male) recruited from 19 cancer centres across Europe, Asia and other regions.

Diagnoses were diverse, including sarcoma (21%), lymphoma (19%) and leukaemia (12%). Most participants (81%) were undergoing active treatment, with 79% receiving treatment with curative intent.

The participants completed the HRQOL questionnaire and provided feedback on question wording, acceptability, relevance, importance and omissions, before a final 30-item questionnaire was confirmed.

The questionnaire comprised five subscales: activity limitations and life disruptions, worry about cancer and the future, self-esteem, relationships, and positive changes, along with nine single questions. Factor analysis supported this structure, and internal reliability across subscales ranged from moderate to acceptable (Cronbach α 0.659–0.770).

Items reflecting reprioritisation (89%) and motivation to ‘live life to the full’ (84%) were among the most widely endorsed. Appearance- and fertility-related concerns were priority issues for approximately a quarter of respondents. Questions about death and intimate relationships were considered sensitive by some AYAs, yet completion rates were high.

In addition, AYAs identified further HRQOL concerns, such as intimacy, emotional sequelae and telling others about cancer and treatment adverse effects, that were not fully captured within the 30-item limit.

Limitations and future research

Response rates to study invitations were not recorded, although the authors said they endeavour to do this in future work. Although the questionnaire demonstrated strong cross-cultural applicability, it was noted that it might not fully reflect nuances across developmental subgroups or specific cancer and treatment types.

An international validation study is planned to confirm the questionnaire’s psychometric properties and broader acceptability. The authors further propose that clinicians could supplement the tool with additional items from the EORTC Item Library or the Write-In Symptoms/Problems Scale to capture individualised concerns.

By highlighting the distinctive physical, psychosocial and existential challenges faced by AYAs with cancer, the final QLQ-AYA30 offers a robust and promising means of supporting patient-centred care in both clinical trials and AYA oncology practice, the authors concluded.

Reference
Sodergren SC et al. Development of a Health-Related Quality of Life Tool for Adolescents and Young Adults with Cancer. JAMA Netw Open 2025;8(12):e2549071.