Exploration of the relevance and comprehensibility of the European Organization for the Research and Treatment of Cancer Sexual Health Questionnaire among Danish young adults aged 18-39: a national cross-sectional study

BACKGROUND: The EORTC Sexual Health Questionnaire (EORTC QLQ-SH22) assesses sexual health-related quality of life in adult cancer patients. However, it may not fully address age-dependent issues in young adults aged 18–39 at diagnosis. This study aimed to explore the questionnaire’s relevance and comprehensibility for young adults with cancer and identify topics needing elaboration or missing.

METHODOLOGY: IN: this cross-sectional study 60 young adults with cancer across treatment stages rated item relevance on a Likert scale and gave qualitative feedback through a “think-aloud” process and semi-structured interviews. Quantitative analyses examined item relevance using mean scores and predefined thresholds. Qualitative data were analysed using reflexive thematic analysis.

RESULTS: Twenty-one of the 22 items were rated relevant. Participants suggested refining wording to improve comprehensibility. Interviews indicated a need to expand coverage of intimacy, communication with professionals, body changes and body image, and partnership. Missing topics included singlehood, cancer before sexual debut, contraception and fertility, and gender diversity.

CONCLUSIONS: The EORTC QLQ-SH22 is relevant for young adults with cancer but may be improved through clearer wording, elaboration of key topics, and inclusion of missing items. An international content validity study in this population is recommended to guide future development.

SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s41687-025-00988-w.