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. 2022 Nov-Dec:67:52-56.
doi: 10.1016/j.pedn.2022.06.012. Epub 2022 Aug 5.

Transition program: Initial implementation with adults with neuromuscular conditions

Eduardo Del Rosario  1 , Adella Bodden  2 , Debra A Sala  2 , Aline Goodman  2 , Connie Lam  3 , Mara Karamitopoulos  2
Affiliations

Transition program: Initial implementation with adults with neuromuscular conditions

Eduardo Del Rosario et al. J Pediatr Nurs. 2022 Nov-Dec.

Abstract

Purpose: To identify current medical and psychosocial needs and to examine the effectiveness of healthcare transition program for adult-aged patients with neuromuscular conditions transitioning from pediatric to adult services.

Design and methods: At Neuromuscular Transition Clinic visit, 46 patients were evaluated and referred to adult-based providers, if did not currently have one, from an acquired list of interested clinicians. At mean follow-up of 22 months, 42 were interviewed by phone regarding referrals for Core Services (primary care, physiatry, dental care and gynecology), Medical Specialties and Rehabilitation Services. Mean age was 30 years with 62% males. Majority (74%) had cerebral palsy. Sixty percent were non-ambulatory.

Results: As per protocol, all were indicated to need Core Services. Eighty-three percent already had adult primary care provider. Most referrals were given for physiatry (62%), vocational training (100%), and occupational therapy (88%). At follow-up, visits were completed most frequently with adult provider for primary care (100%), occupational therapy (78%), and neurology (75%). Referred provider was seen 100% for physiatry, neurology, physical therapy, occupational therapy and vocational training. Of the total 125 referrals given across all services, 73 (58%) participants had completed a visit with an adult provider.

Conclusions: As only about 60% transitioned to adult-based services after referral, healthcare transition remains challenging and requires tailoring of services according to patients' needs, staff and willing-and-available adult-based providers.

Practice implications: Transitioning healthcare of patients with neuromuscular conditions from pediatric- to adult-based providers remains challenging. This clinical specialty requires tailoring of services based on patient's needs, and availability of adult-based providers and resources.

Keywords: Adult-based healthcare; Cerebral palsy; Interdisciplinary; Neuromuscular; Pediatric-based healthcare; Transition.

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