ABSTRACT
Despite increasing early rehabilitation and mobilisation (ERM) in paediatric intensive care, current evidence for ERM of neonatal and paediatric patients receiving extracorporeal membrane oxygenation (ECMO) is limited. The proposed benefits of ERM in neonatal and paediatric ECMO patients are multifaceted, including reduced immobility related issues and maintenance of functional ability. However, ECMO presents additional safety and logistical challenges, and currently there are no published neonatal or paediatric guidelines. A consensus document was developed to provide guidance for ERM with neonatal and paediatric ECMO patients. The document was developed by specialist physiotherapists from nine ECMO centres within the UK and Ireland, together with the UK Paediatric Critical Care Society ECMO group and members of the multidisciplinary team. The document covers key considerations and practicalities for completing ERM in this population including, acuity level measurement, activity level guidance, safety and risk assessment, and goal setting. Risk assessment and safety checklist bedside tools are also included and designed to be adapted as required to meet specific unit policies and protocols.
ABSTRACT
Extracorporeal Life Support (ECLS) is often considered successful if the child leaves intensive care alive. For the child and family, a major concern is quality of life. Aim of this study is to compare health-related quality of life scores of children following cardiac ECLS to a healthy control group. Cross-sectional prospective study using Pediatric Quality of Life Inventory 4.0 Generic Core Scale questionnaire. Population included consecutive children between two and sixteen years of age who underwent cardiac ECLS from 2005 to 2016 and their parents. Each age groups' mean and standard deviation was analyzed individually with minimal clinically important difference calculated. We then compared the scores to a healthy population group. Cronbach's alpha for reliability was calculated and linear regression assessed for relationships between demographics and quality of life scores. Forty-one (60%) families responded. The ECLS had significantly (statistically and clinically) lower health-related quality of life scores in every domain when compared to the healthy cohort. The lowest mean total score was school functioning for both children (59.79 vs 81.31, p < 0.01) and parents (59.01 vs 78.27, p < 0.01). Parents had excellent reliability (α = 0.93, 0.95 & 0.90) compared to children with reliability improving with increasing age in children. Improvements in the management of pediatric patients following ECLS are required to improve their health-related quality of life. Further research is warranted to explore the physical and psychological effects of cardiac ECLS on pediatric survivors to establish individual healthcare needs and optimize health-related quality of life.
