Mobile Autonomy in Children with End-Stage Heart Failure
Research type
Research Study
Full title
The Berlin Heart Study: Mobile autonomy in children with end-stage heart failure. A qualitative study.
IRAS ID
229550
Contact name
Judith Rankin
Contact email
Sponsor organisation
Newcastle Joint Research Office
Duration of Study in the UK
0 years, 4 months, 31 days
Research summary
Worldwide, there is approximately 23 million people affected by chronic or acute heart failure. There is a shortage of available heart donors, especially for children. This means it is more likely that mechanical device to support the heart will be needed. A mechanical device is known as a Ventricular Assist Device (VAD). The placement of a VAD is most frequently used as a ‘bridge to transplant’. This means it is a temporary solution to support the child’s cardiac output until a transplant becomes available. The increased use of mechanical devices has had a huge impact on survival. Before mechanical device use became widespread, death was a realistic outcome for children in heart failure. For children, impact felt by end-stage heart failure is greater than in adults, as the device requires hospital residency, meaning they could be hospitalised for several months. This will likely have long-term impact on quality of life, and is costly to the healthcare system. Having a mobile device could improve the quality of life of both the child and their family through not having a mid to long term residential stay in hospital. Healthcare capacity could also increase given ICU beds would not have to be used, as well as potentially reducing healthcare costs.
A new Berlin Heart EXCOR mobile driving unit for children that will allow them to receive outpatient care is currently being developed by Berlin Heart (a company that develops VADs). At present, there is no research into the acceptability of such a device by patients and their families. This study will investigate the experiences, needs and perceived acceptability of outpatient care for children dependent on a VAD, from the perspective of children and their families who have resided in hospital on a VAD.REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
17/NE/0267
Date of REC Opinion
21 Aug 2017
REC opinion
Favourable Opinion