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Abstract Details

Barriers and Facilitators to Accessing Huntington’s Disease (HD) Care: HD Providers’ Perspectives
Movement Disorders
P9 - Poster Session 9 (5:00 PM-6:00 PM)
16-006

To explore individual, community, and health system factors that influence access to HD care for all HD patients, including Latinos with HD.

Access to specialized HD care is crucial for HD patients' timely access to treatments, clinical research, and psychosocial support. Social and structural determinants of health are known to impact access to specialized neurologic care for minoritized groups, although less is known about their influence on access to HD care.

Through a 60-minute focus group, four HD providers at HDSA Centers of Excellence (COEs) in California, Florida, and Texas were asked to identify what they perceived as barriers and facilitators to HD care for 1) all HD families and 2) Latino families. Guided by the National Institute of Minority Health and Health Disparities (NIMHD) Research Framework, we used a deductive thematic analysis in which two independent coders analyzed the transcript, and codes with greater than 50% agreement were grouped into barriers or facilitators to HD care.

Availability of services and quality of care were the most frequently used codes. Common barriers for all patients include limited disease knowledge, restrictive health insurance plans, and geographic proximity to a COE. Facilitators included access to HD resources and caregiver support. For Latino patients, barriers included certain cultural norms and limited English proficiency. Facilitators included access to language-concordant HD providers and educational resources.

Health system, interpersonal, and individual level factors influence access to HD care for all patients, whereas language and culture are key factors for Latino families. Equitable care for Latino HD families requires both cultural humility and language-appropriate services.

Authors/Disclosures
Mariann A. Tobar
PRESENTER
Ms. Tobar has nothing to disclose.
Paola Perez, BS Miss Perez has nothing to disclose.
Stephen Aradi, MD (University of South FLorida) Dr. Aradi has nothing to disclose.
Alexandra O. Duffy, MD, FAAN (UC Davis Health) Dr. Duffy has nothing to disclose.
Erin Furr-Stimming, MD, FAAN (University of Texas Health Science Center-Houston) Dr. Furr-Stimming has received personal compensation for serving as an employee of Help4HD International. Dr. Furr-Stimming has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Medscape. Dr. Furr-Stimming has received personal compensation in the range of $500-$4,999 for serving as a Consultant for MedPage. Dr. Furr-Stimming has received personal compensation in the range of $500-$4,999 for serving as a Consultant for PTC Therapeutics. Dr. Furr-Stimming has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Wave Life Sciences. Dr. Furr-Stimming has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Latus Bio. Dr. Furr-Stimming has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Atalanta Therapeutics. Dr. Furr-Stimming has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Novartis. Dr. Furr-Stimming has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for SkyHawk Therapeutics. Dr. Furr-Stimming has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Novartis . Dr. Furr-Stimming has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Atalanta Therapeutics. The institution of Dr. Furr-Stimming has received research support from Roche/Genetech. The institution of Dr. Furr-Stimming has received research support from Uniqure. The institution of Dr. Furr-Stimming has received research support from CHDI. The institution of Dr. Furr-Stimming has received research support from Huntington Study Group/Neurocrine Bioscienes. The institution of Dr. Furr-Stimming has received research support from NIH/University of Iowa. The institution of Dr. Furr-Stimming has received research support from Sage Therapeutics. The institution of Dr. Furr-Stimming has received research support from HDSA. The institution of Dr. Furr-Stimming has received research support from Prilennia. Dr. Furr-Stimming has received publishing royalties from a publication relating to health care. Dr. Furr-Stimming has received publishing royalties from a publication relating to health care. Dr. Furr-Stimming has a non-compensated relationship as a Committee member with AAN UES Committee that is relevant to AAN interests or activities.
Henry P. Moore, MD (University of Miami - Miller School of Medicine) Dr. Moore has received personal compensation in the range of $0-$499 for serving as a Consultant for Abbvie. Dr. Moore has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Ipsen Pharma. The institution of Dr. Moore has received research support from Sage Therapeutics. The institution of Dr. Moore has received research support from Bukwang Pharmaceutical. The institution of Dr. Moore has received research support from Neurocrine. The institution of Dr. Moore has received research support from CDHI Foundation. The institution of Dr. Moore has received research support from MODUS Outcomes LLC. The institution of Dr. Moore has received research support from University of Kansas Center for Research.
Adys Mendizabal, MD, MS (UCLA) Dr. Mendizabal has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Clinical 好色先生 Alliance. Dr. Mendizabal has received research support from Huntington's Disease Society of America. Dr. Mendizabal has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant with Huntington's Disease Society of America (HDSA).