PURPOSE: Brugada syndrome is an autosomal dominant arrhythmia condition caused by genetic mutations affecting the cardiac conduction system. It is characterized by an abnormal electrocardiogram pattern and a predisposition to syncope and sudden cardiac death. Penetrance is incomplete and expressivity varies greatly within families. This condition is endemic in Southeast Asia, but was described in North America and Europe in 1992. Due to its novelty and complexity there is a scarcity of informational resources. The first aim of this project was to gain insight from individuals and families with Brugada syndrome and to use this information to accomplish the second aim: an educational resource well-suited for families coping with Brugada syndrome. The public health relevance of this project reflects its application to genetic counseling: the development of patient educational resources involves a careful assembly of content and design with attention to patient needs.
METHODS: Ten participants completed a questionnaire which addressed general understanding of the condition, personal experiences, terms and concepts related to Brugada syndrome, and individual perspectives. The responses to the questionnaire were used to help shape an educational resource.
RESULTS: Analysis of the questionnaire responses revealed that some main concepts are well-understood by this study population, while there is considerable lack of understanding of other important concepts associated with Brugada syndrome. Overall participants expressed needs for more information and tools for coping with the condition.
CONCLUSION: A two part educational resource was created to address these needs. A short introductory pamphlet was produced for use as an initial introduction to the condition and an in-depth resource called Brugada syndrome: A Guide for Families was created. The resources include patient-friendly explanations of symptoms, diagnosis, treatment, children, inheritance, genetic testing, and support resources.
| Identifer | oai:union.ndltd.org:PITT/oai:PITTETD:etd-04012010-084959 |
| Date | 28 June 2010 |
| Creators | Chevalier, Amber |
| Contributors | M. Michael Barmada, Ph.D., Robin E. Grubs, Ph.D., CGC, Barry London, M.D., Ph.D. |
| Publisher | University of Pittsburgh |
| Source Sets | University of Pittsburgh |
| Language | English |
| Detected Language | English |
| Type | text |
| Format | application/pdf |
| Source | http://etd.library.pitt.edu/ETD/available/etd-04012010-084959/ |
| Rights | unrestricted, I hereby certify that, if appropriate, I have obtained and attached hereto a written permission statement from the owner(s) of each third party copyrighted matter to be included in my thesis, dissertation, or project report, allowing distribution as specified below. I certify that the version I submitted is the same as that approved by my advisory committee. I hereby grant to University of Pittsburgh or its agents the non-exclusive license to archive and make accessible, under the conditions specified below, my thesis, dissertation, or project report in whole or in part in all forms of media, now or hereafter known. I retain all other ownership rights to the copyright of the thesis, dissertation or project report. I also retain the right to use in future works (such as articles or books) all or part of this thesis, dissertation, or project report. |
Page generated in 0.0247 seconds