Kimberly M Kelly, Trupti Dhumal, Virginia G Scott, Nadia Falah, Rebecca Kronk, Alissa Bovee Terry, Kristi Graves, Justine Pickarski, Margaret Au
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引用次数: 0
Abstract
This study examined the data generated as part of a seven-session webinar series that focused on genetics care provision in the medically underserved, rural Appalachian region and examined how these services have adapted to challenging practice environments. Barriers and facilitators to care in our region were considered. Data included a baseline survey of registrants, transcripts of sessions, and feedback about sessions. We analyzed data with a sequential and concurrent mixed methods approach. Registrants (n = 137) were disproportionately healthcare providers with genetic services expertise (37.2%). Approximately half (43.8%) of registrants were from KY, WV, and TN in the central Appalachian region. Our baseline survey found that the most noted barriers were the cost of services, lack of providers, and access to care. The most common facilitator was telehealth. Analysis of transcripts identified barriers that were consistent with those noted in the baseline survey, but additional support and network opportunities were discussed to allow for learning across services. Numerous barriers to service delivery were noted; however, despite challenges, participants identified opportunities and resources in the community. These insights will inform a research agenda aimed at advancing genetics services in rural Appalachia, addressing challenges, and leveraging assets for improved healthcare access and outcomes.
期刊介绍:
The American Journal of Medical Genetics - Part A (AJMG) gives you continuous coverage of all biological and medical aspects of genetic disorders and birth defects, as well as in-depth documentation of phenotype analysis within the current context of genotype/phenotype correlations. In addition to Part A , AJMG also publishes two other parts:
Part B: Neuropsychiatric Genetics , covering experimental and clinical investigations of the genetic mechanisms underlying neurologic and psychiatric disorders.
Part C: Seminars in Medical Genetics , guest-edited collections of thematic reviews of topical interest to the readership of AJMG .