MP34-06 IMPROVING THE AWARENESS OF RARE GENETIC DISEASE MULTIDISCIPLINARY TEAM (MDT) CLINICS

Abstract

You have accessJournal of UrologyHealth Services Research: Quality Improvement & Patient Safety II (MP34)1 Sep 2021MP34-06 IMPROVING THE AWARENESS OF RARE GENETIC DISEASE MULTIDISCIPLINARY TEAM (MDT) CLINICS Wiktoria Milczynska, Amy de Wolf, Akhil Mohindra, and Tet Yap Wiktoria MilczynskaWiktoria Milczynska More articles by this author , Amy de WolfAmy de Wolf More articles by this author , Akhil MohindraAkhil Mohindra More articles by this author , and Tet YapTet Yap More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000002043.06AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: The recent guidelines from European Academy of Andrology recommend increasing knowledge of Klinefelter Syndrome and creating multidisciplinary teams to care for affected patients. However, raising awareness of rare genetic disease clinics represents a significant challenge, due to limited recognition amongst patients and clinicians as well as limited resources. Our aim was to look at cost-effective strategies to raise awareness of a national access Klinefelter Syndrome multidisciplinary (KSMDT) clinic among patients and healthcare professionals. METHODS: This longitudinal Quality Improvement Project was carried out over a 6-month period (2020 - 2021) at a tertiary hospital where the KSMDT clinic is located. Two Plan-Do-Study-Act (PDSA) cycles were carried out. The first intervention consisted of creating an informational video about the clinic which was disseminated through Facebook, Twitter and YouTube. The second intervention involved refining the user experience of the clinic’s website. Surveys were distributed amongst KS support group members (n=70) and local primary care practitioners (n=27) before and after intervention, and a focus group (n=6) was held for the second intervention. RESULTS: Awareness of the clinic in the community increased from 33% pre-intervention to 70%. Similarly, awareness of the clinic’s website increased by 31% with an increased retention rate of 61.2% for the multimedia resources accessed. A total of 81% of patients reported that the video helped them understand the aims of the KSMDT. The engagement associated with website use increased by 13% for the focus group post-intervention. The interventions were associated with no financial costs. CONCLUSIONS: Our results indicated that a multifactorial approach, working with both patient and clinician populations, is successful in increasing awareness of rare disease services like the KSMDT clinic. Future awareness strategies need to employ more effective ways of engaging clinician and patient alike, such as targeted programs on social media and virtual programmed sessions with the KSMDT team. Source of Funding: None © 2021 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 206Issue Supplement 3September 2021Page: e618-e618 Advertisement Copyright & Permissions© 2021 by American Urological Association Education and Research, Inc.MetricsAuthor Information Wiktoria Milczynska More articles by this author Amy de Wolf More articles by this author Akhil Mohindra More articles by this author Tet Yap More articles by this author Expand All Advertisement Loading ...