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Reduced Quality of Life in Ehlers-Danlos Syndrome

HOFFMAN, JESSICA ANNE
http://rave.ohiolink.edu/etdc/view?acc_num=ucin1218510126

Abstract Details

2008, MS, University of Cincinnati, Allied Health Sciences : Genetic Counseling.
Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders primarily characterized by joint laxity and skin/soft tissue involvement. Individuals with EDS often report symptoms that significantly impact their lives but are overlooked by healthcare professionals. We conducted a cross sectional, survey-based study to examine health-related quality of life (HR-QOL) in EDS. The Medical Outcomes Study Short Form-36 (SF-36), Brief Pain Inventory (BPI), Pittsburgh Sleep Quality Index (PSQI), and a demographic survey were sent to 211 potential participants. Seventy-four completed surveys were received for a response rate of 35%. HR-QOL in the EDS population was significantly lower than the general population in virtually every domain. Vitality and physical functioning were the most significantly impacted domains, therefore we hypothesize that sleep/fatigue and pain are possible factors attributing to the reduced HR-QOL. Physicians and medical caregivers should use a team approach to effectively manage symptoms and improve HR-QOL in EDS patients.
Brad Tinkle, MD, PhD (Committee Chair)
Carrie Atzinger, MS, CGC (Committee Member)
Victoria Surdulescu, MD (Committee Member)
Michael Yi, MD (Committee Member)
27 p.
Genetics; Nursing
Ehlers-Danlos syndrome; quality of life; SF-36

Recommended Citations

Citations

  • HOFFMAN, J. A. (2008). Reduced Quality of Life in Ehlers-Danlos Syndrome [Master's thesis, University of Cincinnati]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1218510126

    APA Style (7th edition)

  • HOFFMAN, JESSICA. Reduced Quality of Life in Ehlers-Danlos Syndrome. 2008. University of Cincinnati, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=ucin1218510126.

    MLA Style (8th edition)

  • HOFFMAN, JESSICA. "Reduced Quality of Life in Ehlers-Danlos Syndrome." Master's thesis, University of Cincinnati, 2008. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1218510126

    Chicago Manual of Style (17th edition)

ucin1218510126
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© 2008, all rights reserved.
This open access ETD is published by University of Cincinnati and OhioLINK.