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Pain, pain management, and quality of life in Ehlers-Danlos related disorders

Dawson, Tracy (2014) Pain, pain management, and quality of life in Ehlers-Danlos related disorders. Master's Thesis, University of Pittsburgh. (Unpublished)

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Ehlers-Danlos syndrome (EDS) is a group of inherited connective tissue disorders that result in joint hypermobility, skin fragility, and chronic pain. Undiagnosed connective tissue disorder (UCTD) describes individuals who present with symptoms consistent with a connective tissue disorder, but do not have a confirmed clinical or genetic diagnosis. A quantitative study was conducted to investigate the relationship between pain and quality of life (QOL) in individuals with EDS or UCTD. The types of pain management techniques used and their reported effectiveness were also investigated. Adults (n = 23) and children (n = 7) with EDS or UCTD completed questionnaires on pain (PQAS© for adults and PedsQLTM Pediatric Pain Questionnaire TM for children), quality of life (PedsQLTM Generic Core Scale) and pain management. The results demonstrated that chronic pain is common, with variability in the type and frequency of pain experienced. Increased pain is significantly related to decreased quality of life in the adult sample (p < 0.01). The majority (85.7%) of the participants in this sample used pain management techniques and reported a wide variety of management types. In conclusion, the findings in the present study suggest that pain is common and may impact the QOL of individuals with EDS and UCTD. The public health impact of this study is to increase awareness of EDS and UCTD and the difficulties in treating and managing these conditions. Future studies are warranted to determine which pain management techniques are most effective in improving QOL in EDS and UCTD.


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Item Type: University of Pittsburgh ETD
Status: Unpublished
CreatorsEmailPitt UsernameORCID
Dawson, Tracytad53@pitt.eduTAD53
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairMcConnell,
Committee MemberShaffer, Johnjrs51@pitt.du
Committee MemberNolan,
Date: 27 June 2014
Date Type: Publication
Defense Date: 11 April 2014
Approval Date: 27 June 2014
Submission Date: 7 April 2014
Access Restriction: No restriction; Release the ETD for access worldwide immediately.
Number of Pages: 93
Institution: University of Pittsburgh
Schools and Programs: School of Public Health > Human Genetics
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: connective tissue disorder
Date Deposited: 27 Jun 2014 21:24
Last Modified: 15 Nov 2016 14:18


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