UNIVERSITY STUDY ON PAIN AND DECISION-MAKING NEEDS RELATED TO PAIN MANAGEMENT AMONG YOUNG WOMEN WITH HYPERMOBILE EHLERS-DANLOS SYNDROME (hEDS) OR GENERALIZED JOINT HYPERMOBILITY SPECTRUM DISORDER (G-HSD) DESCRIPTION:

A team at the University of Ottawa is conducting a research study in English on the experiences and decision-making needs of young women with hEDS and G-HSD. The goal of this study is to describe the experiences of pain and decision-making needs related to pain management among young women with hEDS and G-HSD. They are conducting 45-60 minute interviews via telephone call or videoconference software (e.g., Zoom).

If you decide to participate, you will be asked about your pain, the treatment options you chose, the impact it had on your life and how you felt about making treatment decisions. You will be asked to complete a pain catastrophizing, sociodemographic and medical questionnaire.

You may qualify for the study if: • You are 18-30 years of age • You are female • You live in Canada • You have been diagnosed with hEDS or with G-HSD • You live with persistent or recurring pain for over 3 months Participants will be selected on a first-come, first-served basis.

This study can help researchers and healthcare practitioners understand hEDS- and G-HSD-related chronic pain through the patients’ thoughts, emotions and beliefs. It can also help determine the quality of pain management decisions and find ways to help individuals with hEDS and G-HSD make the best decisions possible. This research is being conducted independently from the organizations and agencies from which participants may be recruited. After the completion of the study, you will be provided with a small compensation to recognize your contribution and time.

If you have any questions about participating in this study or would like to participate, please contact the lead investigator, Dr. Karine Toupin April, at [email protected]