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"Ready for home?" Multidisciplinary and caregiver views on children with Berlin Heart EXCOR active: a qualitative
Franziska Markel1,2,3, Marie Thöle1,2,3, Marilena Menz1,2,3
1Department of Developmental Pediatrics and Psychocardiology, Deutsches Herzzentrum der Charité - Charité Campus Virchow-Klinikumhttps://ror.org/01mmady97, Berlin, Germany.
Insights
Safely discharging children on the Berlin Heart-EXCOR® Active (BH-EA) requires improved alarm management and caregiver support. Enhanced training and robust healthcare networks are crucial for successful home transition and long-term patient well-being.
Area of Science:
- Pediatric Cardiology
- Biomedical Engineering
- Healthcare Management
Background:
- Berlin Heart-EXCOR® Paediatric (BH-EA) is a vital mechanical circulatory support device for children under 30 kg, primarily used as a bridge to transplant or recovery.
- While survival rates have improved, comprehensive understanding of morbidity and quality of life for pediatric patients on BH-EA remains limited.
- The clinical focus is shifting towards safe home discharge for children using BH-EA, necessitating insights from multidisciplinary teams and caregivers.
Purpose of the Study:
- To explore the perspectives of healthcare professionals and caregivers on the safety, daily care, and home discharge requirements for pediatric patients using the EXCOR® Active (BH-EA) driving unit.
- To identify challenges and prerequisites for transitioning children on BH-EA from hospital to home environments.
- To inform the development of improved clinical practices and support systems for pediatric mechanical circulatory support.
Main Methods:
- Semi-structured interviews were conducted with 22 multidisciplinary professionals and 3 caregivers of hospitalized children on BH-EA.
- Explored themes included device safety, daily care protocols, hospital environmental factors, and requirements for home transition with EXCOR® Active.
- Qualitative analysis focused on alarm management and home-discharge prerequisites.
Main Results:
- Frequent low-priority alarms associated with BH-EA contribute to alarm fatigue among staff.
- Participants identified a need for clearer alarm management procedures, shared responsibilities, and enhanced caregiver training.
- Essential prerequisites for safe discharge include a 24/7 emergency hotline, remote monitoring capabilities, comprehensive support systems, and strong healthcare networks.
Conclusions:
- Current BH-EA alarm management is optimized for in-hospital use, raising concerns about reliable home monitoring for critical events like clot formation.
- Multidisciplinary collaboration is vital to improve device safety, empower caregivers, and establish effective discharge programs for pediatric BH-EA patients.
- Organ allocation policies may need adjustment to prevent disadvantages for children discharged home while awaiting transplantation.
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.
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