Rehabilitation Therapy Programs and Services for Pediatric Heart Transplant Patients in the Acute Peri-transplant Period: A National Survey

Research Objectives: To describe how rehabilitation therapy programs and services (i.e., physical therapy (PT), occupational therapy (OT), speech therapy (ST), and feeding therapy (FT)) operate in pediatric tertiary care centers across the US with children during their heart transplant (HT) hospitalization. To determine what functional outcomes are used in pediatric HT patients.

Design: Cross-sectional study.

Setting: Tertiary care centers that perform pediatric HT.

Participants: We included rehabilitation providers (i.e., physical medicine and rehabilitation (PM&R), physical therapists (PT), occupational therapists (OT), and speech-language pathologists (SLP)) affiliated with tertiary care centers across the US.

Interventions: N/A

Main Outcome Measures: Data regarding demographic provider-specific information (i.e., title, discipline, years of experience) and hospital-specific information regarding rehabilitation programs are utilized (i.e., when/how rehabilitation services are initiated, how the need for rehabilitation services is assessed, how often providers recommend therapy or not, outcome measurements and barriers to children receiving therapy) were collected.

Results: Of the 65 providers who were sent the online survey, 32 (49%) responses were received from 21 distinct tertiary care centers. The distribution of respondents in each discipline was 13 (41%) PT, 8 (25%) SLP, 5 (16%) PM&R MD/DO, 5 OT (16%), and 1 (3%) PM&R NP. Most respondents (91%) had over 5 years of clinical experience. Rehabilitation program services are most commonly initiated by physicians/providers alone (22%) or in coordination with the rehabilitation team (22%). Services were commonly reported to start as soon as possible (44%) or during HT waitlist (13%). To assess functional outcomes, 38% of providers reported using standardized motor, language, and/or feeding tests. Motor (19% 6 minute walk test and manual muscle testing) and feeding (29% video fluoroscopic swallow study) outcomes were the most consistently assessed. However, 38% of providers stated that their institutions use standardized assessments inconsistently, and 24% of respondents stated that standardized protocols are not used. The median (IQR) percent of the time that providers recommended inpatient rehabilitation was 20% (5, 33), compared to home discharge 95% (71, 97). Of those that recommended home discharge, the median (IQR) percent of the time that providers recommended outpatient/clinic therapy was 50% (50, 80), early intervention/home health was 50% (21, 95), or no therapy was 13% (4, 20).

Conclusions: Pediatric HT patients frequently receive rehabilitation therapies. Our results emphasize the difference in practice and perception between and within the surveyed institutions. Further research to help standardize rehabilitation interventions in pediatric HT is warranted. This study highlights the lack of consensus when measuring outcomes in critical functional areas.

Author(s) Disclosures: N/A