Transitioning Neuromuscular Disease and Chronic Respiratory Failure Patients from Pediatric to Adult Care

A study published online as part of the ATS 2020 International Conference analyzed the transition of care for patients with neuromuscular disease (NMD) and chronic respiratory failure (CRF) from the pediatric to adult pulmonologist setting.

In 2017, the University of Pennsylvania launched the Fishman Program for Home Assisted Ventilation, the first specialized adult pulmonary program in the region. Until this time, about 150 ventilator-dependent patients aged older than 18 years continued receiving care from pediatric pulmonologists at Children’s Hospital of Philadelphia.

To examine the bridge between pediatric and adult care, the study authors performed a prospective, observational study of six ventilator-dependent young adults with NMD and their caretakers. Telephone interviews were conducted with patients and their respective caregivers (n=4), as well as caregivers for patients who were unable to communicate (n=2). A 20-item questionnaire, a Perceived Stress Scale questionnaire, and the Pediatric Quality of Life Neuromuscular Module questionnaire were used to assess outcomes.

The mean patient age at which discussion for transition began was 25.2 years, and mean age at transition was 28.3 years. Two of four patients and all caretakers expressed concern regarding their transfer before meeting the transition team; after meeting the team, they all felt their concerns were addressed. The most concerns were changing medical providers and losing the relationship with the pediatric care team.

All interviewees said the transition team adequately prepared them to transfer to an adult pulmonologist and clearly presented their transition plan. All patients had a second visit with their adult pulmonary provider; after the transition, no patients had another visit with their pediatric pulmonary team. On a 40-point scale, patients had a mean 9.5 stress score, indicating low stress, while caregivers scored 15.2, indicating moderate stress.

The study authors concluded, “Understanding this process is critical in identifying needs, establishing guidelines, and to promote future research in the transitional care for individuals with NMD and CRF.”