Angelman Syndrome Interdisciplinary Clinics: Parent Perspectives on Clinic Efficiency
Capstone Project Committee: Natalie Beck, MS, CGC, Beth Boyea, MS, CGC, Lauren Doyle, MGC, CGC, Megan Mann, MS, CGC
Angelman syndrome is a neurodevelopmental disorder characterized by intellectual disability, seizure activity, absence of speech, and gait ataxia. This genetic disorder is often managed by a variety of specialists across many disciplines. It has been suggested that a disease specific interdisciplinary approach is the best way to manage chronic disorders in children. It is on this model of care that this study was focused. There are currently three funded Angelman Syndrome interdisciplinary clinics in the United States based out of the University of North Carolina-Chapel Hill, Massachusetts General Hospital, and Mayo Clinic in Rochester, Minnesota. In 2014, the Angelman Syndrome Foundation committed more than $1.5 million to establish 17 clinics across the country. As these clinics emerge, guidelines to ensure quality patient care are necessary. This study surveyed parents of people with Angelman syndrome to collect both qualitative and quantitative data. This study aimed to measure parent satisfaction with their child’s services, elicit parent experiences with Angelman syndrome interdisciplinary clinics, and evaluate what Angelman syndrome interdisciplinary clinics can do to best address parents’ concerns and desires. Based on the information collected in this study, we present ten recommendations for clinic management. These recommendations have the potential to be used in the establishment and continuation of Angelman Syndrome multidisciplinary clinics throughout the country.
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