The European Organisation of Research and Treatment of Cancer (EORTC) is conducting research to better understand health-related quality of life (HRQoL) concerns among people living with rare cancers. Recently, researchers analyzed results from a group of 31 people with EHE from 11 different countries who participated in the study. The findings showed that pain–and the extent to which pain interferes with daily life–was the most significant quality of life concern reported by people with EHE. 

As part of the study, researchers evaluated how well an existing standardized HRQoL questionnaire captured the lived experience of people with EHE. They found that while many parts of the questionnaire were relevant, the survey alone did not fully reflect the range of challenges faced by people with EHE. Participants shared a broad range of physical, social, and mental health concerns, and the researchers found that people with EHE have a unique burden that is complicated by the rarity of the disease and lack of information about treatment and disease progression. 

Why this matters:

The findings from this study will help researchers improve the assessment of health-related quality of life for people with EHE in future research. Studies like this highlight the vast and varied experiences of individuals living with EHE, and that those differences matter. By learning to better measure the impacts of EHE on a person’s quality of life, researchers can better understand how effective new therapies and drugs are at improving HRQoL. As a partner in this important work, the EHE Foundation would like to thank the researchers, patients, and their families for their essential role in advancing patient-centered EHE research.