Sabrina M. Neeley, PhD, MPH

This study will explore the relationships between self-efficacy, locus of control, and self-management behaviors in adult patients and parents of child patients with Ehlers-Danlos Syndrome (EDS). Participants included adult (age 18 and older) attendees at the 2010 Ehlers-Danlos Learning Conference, and the survey is now available on Survey Monkey; it is separated into two surveys (one for patient, one for parent) to make it even easier. The survey takes approximately 15 minutes to complete. There will minimal risk to participants. The survey contains no information that can be used to link any individual to his or her responses.

This information will be used to develop tools to help EDS patients, and parents of child patients, learn the most effective ways to self-manage the condition and develop collaborative relationships with healthcare providers, in order to maximize quality of life.

Patient Survey: Click here to take the survey for adult EDS patients.

Parent Survey: Click here to take survey for parents of child EDS patients.