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 by PROSPERO is ongoing. Data extraction and quality assessment is completed. Data synthesis of 124 papers and manuscript writing has started. An issue list will be compiled based on literature.

Obtaining ethics and signing contracts for 15 of 20 collaborating institutes to start recruitment for interviews of objective 1, 2, 3.

Interviews with SGM cancer patients and EORTC stakeholders to explore barriers and facilitators to participation in clinical trials have started.

First meeting with patient panel organized.

Continue with interviews to explore barriers and facilitators to participation in clinical trials.

Start with interviews for objective 2 and 3 after ethical approval from collaborating institutes has been obtained and an issue list based on literature is complied and translated.

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