Health-Related Anxiety VEDS Study

Health-related anxiety and quality of life in individuals with Vascular Ehlers-Danlos Syndrome and their families

Study Title

Health-related anxiety and quality of life in individuals with Vascular Ehlers-Danlos Syndrome and their families.

Objective

Living with vEDS, or having a family member affected by it can lead to significant emotional and psychological challenges.

Previous research has suggested that individuals with rare and chronic conditions may experience heightened levels of health-related anxiety and reduced quality of life, however there is limited data specifically focusing on the vEDS community. 

The aim of this study was to investigate the relationship between health-related anxiety and quality of life in individuals diagnosed with vEDS and their family members. The study used an online questionnaire design, which was completed remotely.

The questionnaire included validated measures of health-anxiety and quality of life, along with demographic and tailored clinical questions. The study ran for a total of 4 months, allowing for sufficient time for recruitment, data collection and analysis. 

Method

Data was collected through an online questionnaire through the University of Sussex, 1 set of questions for patients, 1 set of questions for family members.

Eligibility

Participants in this study were aged 18 and over and they or a family member was diagnosed or undergoing genetic testing for Vascular Ehlers-Danlos Syndrome. 

Lead Researcher

This research was conducted by Holly Rawlings-Taylor, an undergraduate student in the School of Psychology at the University of Sussex. The project forms part of the requirements for the BSc Psychology with Clinical Approaches degree under the supervision of Professor Sarah King. The research is not externally funded and is being carried out as part of the student’s academic coursework at the University of Sussex.