Abstract Details

Title Transition Preparedness: a Pilot Study in Texas Children’s Hospital Muscular Dystrophy Care Clinic

Topic Practice, Policy, and Ethics

Presentation(s) P4 - Poster Session 4 (5:30 PM-6:30 PM)

Poster/Presentation
Number 4-066

Objective To determine the experience, concerns, and the comfort and knowledge level of families regarding transition from a multidisciplinary pediatric neuromuscular clinic to an adult care setting.

Background

The National Survey for Children’s Health revealed that only ~15% of youth with & without special healthcare needs received transition planning assistance from their healthcare providers, thus failing to meet the national performance measure for healthcare transition. Transition preparation is an important aspect of care for pediatric patients with neuromuscular disorders. More recently, advances in gene therapy treatments and multidisciplinary care have provided greater longevity in pediatricneuromuscular diseases. Therefore, transition planning is essential for effective care.

Design/Methods A transition questionnaire for patients with neuromuscular disease was developed based on the 2016 consensus statement regarding transition from pediatric to adult health care and from clinical experience. Questions assessed the families' experience with transition, level of education concerning transition, and degree of comfort with transfer to adult care. Questionnaires were distributed to all clinic families with a child ≥ 12 years of age during their clinic visits over a period of ~20 weeks.

Results Twenty-two participants (55%) reported not having a discussion about transition of care with clinic providers. Six reported speaking about it once, seven reported speaking about it 3-5 times, and two families had spoken about it more than 5 times. 2 families did not respond to this item. Thirty-nine families provided information on barriers to a successful transition which included starting over with new doctors, concerns about their child’s ability to make care decisions and being anxious about the Adult Neurologists understanding of their child’s condition.

Conclusions Applying guidelines, standards of care, addressing barriers to transition and providing related tools for the promotion of successful transition of patients with neuromuscular diseases will increase the number of efficient transfers to adult care.

Authors/Disclosures
JaMis M. Jackson, MD (-) PRESENTER	No disclosure on file
Timothy E. Lotze, MD, FAAN (Texas Children's Hospital)	Dr. Lotze has received personal compensation in the range of $5,000-$9,999 for serving as an Expert Witness for Department of Justice VICP. The institution of Dr. Lotze has received research support from NIH. The institution of Dr. Lotze has received research support from National MS Society. The institution of Dr. Lotze has received research support from Sarepta Therapeutics. The institution of Dr. Lotze has received research support from PTC THERAPEUTICS. The institution of Dr. Lotze has received research support from Avexis. Dr. Lotze has received publishing royalties from a publication relating to health care. Dr. Lotze has received publishing royalties from a publication relating to health care.
	No disclosure on file
	No disclosure on file

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