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Living with cutis laxa: an exploratory study

Solanki, Pooja (2020) Living with cutis laxa: an exploratory study. Master's Thesis, University of Pittsburgh. (Unpublished)

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Abstract

Rare diseases, while individually uncommon, collectively may impact up to 10% of the population. This makes rare disease a major global public health issue. Most rare diseases have a genetic etiology. Cutis laxa is one such rare connective tissue disorder; people with the condition often face a high burden of disease but face challenges in finding well-informed and knowledgeable healthcare providers. To better understand the experiences and challenges that people with cutis laxa have while navigating their healthcare systems, six qualitative interviews were conducted amongst English speaking adults who have been diagnosed with cutis laxa. Participants were recruited through the Cutis Laxa Internationale Facebook page; interviews were recorded and conducted through Skype Business. The interviews focused on questions about the process of diagnosis, medical management and care, availability of resources, and sources of support for these participants. The interviews were transcribed and coded for thematic analysis. This study identified several themes, most notably, lack of knowledge amongst providers, concern for provider engagement, anxiety about potential symptoms, desire for coordinated care, and rare disease in the healthcare system. There have been no other qualitative studies that focus on the experiences of people with cutis laxa. This study helps fill this empty niche, provide more information about the experiences and challenges of those that have cutis laxa, offer insight for healthcare providers of patients with cutis laxa and other rare diseases, and contextualize how the needs of the cutis laxa community fit into the greater need for public health interventions with the rare disease population.


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Details

Item Type: University of Pittsburgh ETD
Status: Unpublished
Creators/Authors:
CreatorsEmailPitt UsernameORCID
Solanki, Poojapos22@pitt.edupos
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairUrban, Zsolturbanz@pitt.eduurbanz
Committee MemberDurst, Andreaadurst@pitt.eduadurst
Committee MemberTerry, Marthamaterry@pitt.edumaterry
Date: 30 July 2020
Date Type: Publication
Defense Date: 27 May 2020
Approval Date: 30 July 2020
Submission Date: 31 May 2020
Access Restriction: No restriction; Release the ETD for access worldwide immediately.
Number of Pages: 104
Institution: University of Pittsburgh
Schools and Programs: Graduate School of Public Health > Genetic Counseling
Graduate School of Public Health > Public Health Genetics
Degree: MPH - Master of Public Health
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: qualitative study; rare disease
Date Deposited: 31 Jul 2020 02:42
Last Modified: 31 Jul 2020 02:42
URI: http://d-scholarship.pitt.edu/id/eprint/39149

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