Addressing neutrality and inclusivity in EORTC Quality of Life Measures: Updating gendered language (RESPECT)

The RESPECT project aims to improve the inclusivity of EORTC Quality of Life measures, which assess cancer patients’ well-being. These measures rely on standardized questionnaires to understand the physical, social, and psychological impact of cancer and its treatment. However, some of the language used in these questionnaires does not fully account for the experiences of transgender, gender-diverse, and intersex (TGI) individuals.

An initial analysis highlights several areas where updates to gendered language in EORTC Quality of Life Measures are needed. Some measures focus on cancers affecting specific organs, such as the prostate, breasts, or ovaries, which are often categorized as male or female, even though individuals of different gender identities may have these organs. Furthermore, some questionnaires use binary instructions like ‘for men only’ or ‘for women only’ and include culturally dependent concepts of masculinity and femininity. Lastly, linguistic differences across languages further complicate the implementation of gender-neutral phrasing.

Addressing these challenges involves identifying and implementing effective strategies for updating ‘gendered’ language in these measures, aiming for gender-neutral or, where necessary, gender-inclusive terminology. To achieve this, we will conduct:

• A scoping literature review to examine existing approaches to inclusive language in health assessments,
• An interview study with TGI individuals in English, Dutch, Italian, and Polish to evaluate proposed revisions,
• A modified Delphi study with EORTC stakeholders, researchers, and TGI cancer patients to assess the feasibility and acceptability of these changes.

By ensuring that Quality of Life measures acknowledge the diversity of cancer patients, this project contributes to more inclusive cancer care and research.

The RESPECT project officially began on 15-02-2025 and is currently in its early stages. To date, the following achievements have been made:

• We have obtained ethical approval for the following sites: Erasmus University Medical Center (contract signed; two amendments approved) and Netherlands Cancer Institute Amsterdam (awaiting contract signing). For the other institutes ethical approval is submitted or about to submit.
• An international collaboration network has been established, comprising researchers from the Netherlands, Italy, UK, Poland, Belgium, Nepal, Germany, Austria, Ireland, and Canada.
• The groundwork for a scoping literature review has been laid to identify existing strategies for making survey language more gender-inclusive.

The next step is to complete the scoping review and begin testing proposed language adaptations with participants.

The RESPECT project follows a structured timeline:

• By February 2026: Completion of the scoping literature review and submission of the first academic paper,
• By August 2026: Development of gender-neutral/-inclusive language case examples for EORTC surveys,
• By August 2027: Completion of the modified Delphi study, evaluating the acceptability of these changes,

By February 2028: Establishment of an official procedure for adapting gendered language in EORTC Quality of Life measures.

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

Cancer patients often fill out questionnaires to help researchers and doctors understand their well-being. However, some of these surveys use language that does not fully acknowledge transgender, gender-diverse, and intersex individuals. For example, some surveys use phrases like ‘for men only’ or ‘for women only’ in questions about specific health issues related to organs such as the prostate, breasts, or ovaries, which can exclude individuals with diverse gender identities who may also have these organs and experiences.

The RESPECT project aims to update this language so that all cancer patients feel included. We will review existing strategies, test new wording, and work with experts to ensure the changes are suitable and effective. Our goal is to make cancer care and research more inclusive for everyone.