Mobility and Freedom of Movement: A Novel Out-of-Hospital Treatment for Paediatric Patients with Terminal Cardiac Deficiency and Ventricular-Assist Device

With the rapidly evolving medical and technological progress, more and more pediatric patients with terminal heart insufficiency experience the implant of a ventricular assist device as bridge to transplant without legal approval for hospital discharge. A recently developed mobile driving unit for ventricular assist devices with a long-lasting battery support time can manage small blood pumps, offering improved mobility for pediatric patients. This study strives to elaborate necessary requirements for a safe home healthcare environment (HHE) setting with a mobile driving unit for ventricular assist devices (VAD) for pediatric patients under current VAD-treatment.

By means of three individual case presentations, we analyzed patient- and device-related preconditions (medical, ethical, psychological, technical, structural, organizational) with regard to feasibility and safety. Inclusion criterion was a pediatric patient with terminal cardiac insufficiency under stable medical conditions and in-hospital treatment with a univentricular or biventricular VAD on a mobile driving unit. Analysis was single-center; data were obtained during May 2020 to February 2022.

A total number of three patients on VAD could be identified for HHE treatment on a mobile driving unit. Switch could be performed safely and increased mobility led to improved psychomotor development and quality of health. No complications directly related to HHE treatment occurred. One patient recently underwent an orthotopic heart transplant, one patient remains in HHE and one patient died due to a complication not related to HHE. Positive ethic counseling for off-label use could be obtained, psychological support and mandatory technical training with patients and parents was performed. Involved network of caregivers and medical professionals at patients’ home were briefed intensely. Remote consultations were implemented and interdisciplinary in-hospital controls reduced to a long-term 4-week scheme.

Discharge of pediatric patients from hospital with a mobile driving unit under current therapy with a paracorporeal ventricular assist device is a great challenge, but feasible and can be managed safely. A home healthcare environment can help to improve patients’ psychomotor development, offer normalized social contacts and strengthen both patients’ and parents’ resources. A legal approval and a larger study sample are warranted.