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Fabry patients' perspectives on multidisciplinary clinics

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dc.contributor.advisor Sabbadini, Marta Tapia, Daisy
dc.contributor.other Packman, Wendy
dc.contributor.other Youngblom, Janey 2019-08-29T21:42:51Z 2019-08-29T21:42:51Z 2019 August en_US 2019-08-29
dc.identifier.other Master of Science in Genetic Counseling en_US
dc.description.abstract Fabry Disease (FD) is an X-linked inherited lysosomal storage disorder which leads to progressive tissue damage, particularly in the renal, cardiac, and cerebrovascular systems. Disease presentation can vary among FD patients, males tend to be more severely affected than females. The complexity of disease manifestation means that individuals affected with FD require multispecialty management. A Multidisciplinary Clinic (MDC) is a proposed care delivery model that can provide a more comprehensive approach to clinical management for complex diseases such as FD. This study aims to understand FD patients’ opinions towards the use of an MDC for FD management. Thirty-two adult individuals with FD were interviewed over the phone using a semi-structured interview guide. Of the 32 participants, four were being seen at an MDC, and all four felt that they were getting better overall FD care from the MDC compared to a non-MDC setting and preferred the MDC to their previous clinic model. Additionally, all four would recommend the MDC to other individuals with FD. The remaining 28 participants had never been seen in an MDC. When asked about possible advantages to an MDC setting, the majority (26/28) mentioned the convenience of having various appointments in one day and several (16/28) mentioned the FD expertise of providers participating in the MDC. When asked about challenges, 12/28 participants mentioned that the clinic day could be long and time consuming, additionally 11/28 noted that travel to attend the clinic could be an issue. About half (16/28) said it would not be overwhelming to see multiple providers in one day. Most (20/28) reported that they would be interested in participating in an MDC. These findings suggest that patients see various benefits and are interested in a multidisciplinary approach for managing FD. Evaluating and incorporating the perspectives of patients with FD is essential for the improvement of health outcomes. en_US
dc.language.iso en_US en_US
dc.title Fabry patients' perspectives on multidisciplinary clinics en_US
dc.type Thesis en_US

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