"Ready for home?" Multidisciplinary and caregiver views on children with Berlin Heart EXCOR active: a qualitative study.

BACKGROUND

Paediatric mechanical circulatory support with Berlin Heart-EXCOR® Paediatric is predominantly used as a bridge to transplant or recovery, specifically in children up to 30 kg. While survival with ventricular assist devices has improved, insights into morbidity and quality of life remain limited. Safely discharging children, particularly with the new driving unit EXCOR® Active (BH-EA), is now of clinical interest. Multidisciplinary and caregiver perspectives are needed to inform practice.

METHODS

Through semi-structured interviews with 22 professionals (physicians, nurses, psychologists, engineers, physiotherapists, social workers, child education specialists, chaplains) and three caregivers of hospitalised children on BH-EA, we explored: (1) device safety and daily care; (2) hospital environmental factors; (3) requirements for transitioning home with EXCOR® Active.

RESULTS

Qualitative analysis yielded three main themes; of which two are explored in this publication: alarm management and home-discharge requirements for paediatric BH-EA patients. Participants described frequent low-priority alarms contributing to alarm fatigue. They called for clearer procedures, shared responsibilities, and enhanced caregiver training and identified prerequisites for safe discharge, including a 24/7 emergency hotline, remote monitoring, comprehensive system-wide support, caregiver training, and strong healthcare networks.

CONCLUSION

The interviews highlight that the BH-EA alarm management is conceptualised for in-hospital care, which leads to reservations concerning reliable home monitoring during medical events, such as blood clot formation. Multidisciplinary efforts are essential to enhance device safety, empower caregivers, and develop effective discharge programmes for children on BH-EA. Furthermore, organ allocation systems should be adjusted to avoid disadvantages in organ waiting times following home discharge.