Health-Related Quality of Life Assessment within the Sexual and Gender Minority Cancer Population – DIVERSITY-QOL

The DIVERSITY-QOL project aims to enhance inclusive participation in EORTC clinical trials and research by developing an optimal Health-Related Quality of Life (HRQoL) assessment strategy for the Sexual and Gender Minority (SGM) cancer population. The project has three main objectives:

• Explore barriers and facilitators for participation in clinical trials: Conduct interviews with EORTC stakeholders and SGM cancer study participants to understand the barriers and facilitators for including the SGM cancer population in clinical trials.
• Identify HRQoL Issues: Review literature and conduct interviews to identify HRQoL issues faced by SGM cancer patients and check if these issues are adequately covered by the EORTC Item Library’s cancer-generic C30 and tumor-specific modules.
• Identify Healthcare, Sexuality, and Communication Issues: Review literature and conduct interviews to identify healthcare, sexuality, and communication issues faced by SGM cancer patients and assess if these are sufficiently covered by existing questionnaires (QLQ-PATSAT-C33/OUT-PATSAT7 for healthcare satisfaction, QLQ-SH22 for sexuality, and QLQ-COMU26 for communication).

Systematic review objective 2 and 3 registered in PROSPERO is ongoing.

The updated screening for the mixed‑methods systematic review began on March 16, 2026: 617 new studies were identified for title and abstract screening. One reviewer has completed this stage, and we are awaiting screening by the second reviewer. Full‑text screening (two reviewers), quality assessment (two reviewers), data extraction, and data synthesis will follow.

The draft issue list based on the literature review for the interviews for Objectives 2 and 3 was discussed in Berlin and will be finalized once the updated literature search has been incorporated.

Recruitment has started at three sites and will begin soon at three additional sites.
Ethics approval and/or contractual agreements are still pending at 14 sites.

Interviews for Objective 1 with SGM cancer patients and with principal investigators involved in clinical trials and quality‑of‑life research are ongoing.

All project objectives are currently

ongoing.
Ten principal investigators in cancer trials and quality‑of‑life research have been interviewed for Objective 1, and thematic analysis of the interview transcripts has begun.
Three SGM cancer patients have been interviewed for objective 1, and recruitment is underway at 3 of the 6 active sites, supported by LGBTQIA+/cancer organizations in the Netherlands

Update on the mixed‑methods systematic review screening (March 16, 2026): 617 new studies were identified for title and abstract screening. One reviewer has completed the title and abstract screening, and we are awaiting screening by the second reviewer. Eligible studies will proceed to full‑text screening (2 reviewers), followed by quality assessment (2 reviewers), and data extraction and data synthesis.

The issue list based on the literature review for objectives 2 and 3 will be finalized after the Berlin meeting and once the updated literature search has been completed.

The issue list will be translated with the help of AI, reviewed by local collaborators, and checked to determine whether an amendment to the ethical approval is required.

Writing and submitting the manuscript for the mixed‑methods systematic review is ongoing.
Interviews and qualitative analysis for Objective 1, involving SGM cancer patients and EORTC stakeholders, are continuing, and manuscript writing will start soon.
Interviews for Objectives 2 and 3 will begin once ethical approval has been obtained from the collaborating institutes and an issue list based on the literature has been compiled and translated.

If you are interested to join the project as collaborator, please send an e-mail to Dr. Tom Iepe Bootsma: diversity@erasmusmc.nl

The DIVERSITY-QOL project aims to improve the inclusion of LGBTQIA cancer patients in clinical trials. It focuses on understanding and measuring their quality of life. The project will identify barriers and opportunities for their participation in clinical trials. It will also investigate specific healthcare and communication issues they face. Additionally, it will assess if current EORTC questionnaires cover these issues adequately. By doing this, the project hopes to gain better insights into the experiences of LGBTQIA cancer patients and improve the measurement of their quality of life.