Year: 2014
Type: dissertation
Study design: Observational Study
Abstract: 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.
Author: Tracy Anne Dawson
Language: English
Subfield: Genetics
Domain: Life Sciences
Open Access status: green
OpenAlex ID: W200088563