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Assessing clinical practices and beliefs among providers following women diagnosed or at-risk for Fabry disease

Lynch, Bryony (2017) Assessing clinical practices and beliefs among providers following women diagnosed or at-risk for Fabry disease. Master's Thesis, University of Pittsburgh. (Unpublished)

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For women with Fabry disease, there are several factors which can influence the level of a patient’s engagement with the healthcare system to manage her disease. Unfortunately, some of these factors have the potential to reduce the likelihood that a female patient will become an active participant in her own medical management because of the influence on the patient’s perception of her own disease susceptibility and personal health beliefs, thus increasing her risk for negative Fabry-disease related health outcomes. These factors, such as the past history of labeling women as asymptomatic carriers and the influence of disease burden on the mental health of the patient, are structural and psychosocial in nature, and collectively contribute to the barriers perceived by women to engaging in disease management. Recognizing the multi-faceted origins and complexity of these factors, our team developed a three part project to examine contributing factors and their origins to these barriers. Parts one and two of this project focused on characterizing the health beliefs of females with Fabry disease using the Health Belief Model and identified patients’ perceived severity, susceptibility, and benefits to engaging in Fabry disease related care. This study, part three of the project, focuses on a different source, aiming to characterize Fabry healthcare providers’ clinical practices and beliefs in order to assess their potential role in the contributions to these barriers. By surveying 58 healthcare providers from a variety of locations, potential areas of clinical practice that may influence the health beliefs and barriers of women with Fabry disease were identified, including discrepancies in clinical practice across providers of differing levels of experience, the inconsistent adherence to clinical practice guidelines, and use of the term “carrier” by providers to describe female patients. Understanding the presence of these factors allows for strategies to be developed that can address these barriers, and in turn, optimize clinical health outcomes for female Fabry patients. Furthermore, these strategies can be applied to address barriers for women affected by other X linked conditions, thus signifying the potential for a public health intervention based on the results of this three part project.


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Item Type: University of Pittsburgh ETD
Status: Unpublished
CreatorsEmailPitt UsernameORCID
Lynch, Bryonybml53@pitt.edubml53
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Thesis AdvisorHenderson,
Committee MemberFinegold,
Committee MemberGrubs,
Committee MemberBear,
Date: 29 June 2017
Date Type: Publication
Defense Date: 4 April 2017
Approval Date: 29 June 2017
Submission Date: 26 April 2017
Access Restriction: 2 year -- Restrict access to University of Pittsburgh for a period of 2 years.
Number of Pages: 104
Institution: University of Pittsburgh
Schools and Programs: School of Public Health > Human Genetics
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: No
Uncontrolled Keywords: Fabry disease; Lysosomal storage disorder, female heterozygotes, sex-linked disease, healthcare
Date Deposited: 29 Jun 2017 23:19
Last Modified: 01 May 2019 05:15


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