Abstract Details

Title An Evaluation of Social and Medical Support for Adult Stage Duchenne Muscular Dystrophy

Topic Muscle Disease/Neuromuscular Junction

Presentation(s) (-)

Poster/Presentation
Number 003

Objective

Background Advances in management have led to many patients with DMD reaching adulthood. Adult DMD patients have severe physical disabilities including immobility and ventilator dependency, which demand full time care. Surveying these patients may be helpful in identifying problematic aspects of their care that may be addressed and improved.

Design/Methods We conducted a phone survey on 10 patients with adult DMD selected from a MDA clinic. Patients were between the ages of 20-36 and all were either wheelchair or bed bound and used ventilator support.

Results All patients require 24 hours of care and had federal or state funded financial assistance. All patients receive aid from private duty nurses for ventilator management which ranged from 12 to 24 hours a day. The majority of nurses were LPN. 9 out of 10 patients felt that the nurses were not adequately trained in ventilator care. 4 patients or their surrogates have rejected support from carers because it was felt that they were unable to handle the complexity and severe disability of the patient. 8 out of 10 patients were happy with the prompt provision of practical aids. Aspects of care that were challenging to manage include ventilator care, transferring patient, and lack of awareness of available support programs. 8 out of 10 thought there was a lack of knowledge of their primary health care providers on the specific complications of adult DMD. Estimated cost of disease was reportedly between $120,000 to $200,000 per year.

Conclusions Areas of potential improvement include increasing awareness in primary health care setting and providing better access to appropriate social support programs for adult DMD patients and their families.

Authors/Disclosures
Helen Ly, MD (Integrative Health Associates, PLLC) PRESENTER	No disclosure on file
Tulio E. Bertorini, MD (Semmes Murphey Clinic)	Dr. Bertorini has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Alexion. Dr. Bertorini has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for UCB. Dr. Bertorini has received publishing royalties from a publication relating to health care.
Howard Feldman, MD, FAAN (University of California San Diego)	The institution of Dr. Feldman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Arrowhead Pharmaceuticals. The institution of Dr. Feldman has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Novo Nordisk. The institution of Dr. Feldman has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Janssen Research & Development LLC. The institution of Dr. Feldman has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche/Banner/API. The institution of Dr. Feldman has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Tau Consortium. The institution of Dr. Feldman has received research support from US National Institute of Health NIH/NIA. The institution of Dr. Feldman has received research support from US National Institute of Health NIH/NIA. The institution of Dr. Feldman has received research support from Vivoryon Therapeutics. The institution of Dr. Feldman has received research support from US National Institute of Health NIH/NIA. The institution of Dr. Feldman has received research support from US National Institute of Health NIH/NIA. The institution of Dr. Feldman has received research support from LuMind Foundation. The institution of Dr. Feldman has received research support from US National Institute of Health NIH/NIA. The institution of Dr. Feldman has received research support from Biohaven Pharmaceuticals. The institution of Dr. Feldman has received research support from UC San Diego School of Medicine Brain Health Support Program & Sanford Institute for Empathy and Compassion. The institution of Dr. Feldman has received research support from US National Institute of Health NIH/NIA. The institution of Dr. Feldman has received research support from US National Institute of Health NIH/NIA. Dr. Feldman has received intellectual property interests from a discovery or technology relating to health care. Dr. Feldman has a non-compensated relationship as a Medical Advisory Council with Association for Frontotemporal Degeneration (AFTD) that is relevant to AAN interests or activities. Dr. Feldman has a non-compensated relationship as a International Scientific Advisory Board with Translating Research in Elder Care (TREC) that is relevant to AAN interests or activities.

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