Understanding the Relationship Between Self-Efficacy, Locus of Control, and Self-Management Behaviors in Adult Patients and Parents of Child Patients with Ehlers-Danlos Syndrome (EDS)

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 include adult (age 18 and older) attendees at the 2010 Ehlers-Danlos Learning Conference, and after the conference online using Survey Monkey. Participants will complete a survey that will take 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.

EDS type IV Pregnancy Study

More information about this study (by researchers at the University of Washington and announced several months ago through ENDF.org and in our publications) can be found here on the EDNF website.