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In the realm of pediatric critical care, advancements in technology and medical interventions have significantly increased survival rates, particularly in Extracorporeal Membrane Oxygenation (ECMO) cases. Children’s Mercy Hospital, a pioneer in pediatric ECMO, boasts consistently lower mortality rates and surpasses international survival benchmarks. However, the success in saving lives has unveiled a new challenge – Post Intensive Care Syndrome (PICS) in children.

PICS, defined in 2010 for adults, manifests as new or worsening long-term comorbidities, affecting cognitive, psychological, social, and physical aspects, persisting after an intensive care stay. With up to 88% of pediatric patients demonstrating psychological issues post-ICU, the younger the child at admission, the more profound the impact. Pediatric ECMO survivors are particularly vulnerable, with increased risks correlated to the severity of illness, resuscitation requirements, length of stay, and invasive procedures.

Recognizing the escalating prevalence of PICS among pediatric ECMO survivors, the Children’s Mercy ECMO team initiated a research project focusing on implementing ICU diaries as a potential intervention. The project aims to bridge the gap in PICS research for children, acknowledging the unique challenges they face in psychological recovery compared to adults.

Drawing inspiration from successful ICU diary programs in adult ICUs, the project introduces ECMO-specific customized diaries led by ECMO Registered Nurses (RNs) and Respiratory Therapists (RTs). These diaries serve as a tool to document a patient's progress, illness narrative, and daily occurrences, fostering communication between the healthcare team and families.

Focusing on ensuring feasibility, the project addresses concerns about patient privacy, liability, and long-term sustainability. The diary project involves ECMO staff as exclusive writers, providing a structured entry guide to maintain consistency. Diaries are transferred to families upon completion of the ECMO run, ensuring the hospital is not responsible for their maintenance.

Having obtained Institutional Review Board (IRB) approval, engaged Family Advisory Board Members, consulted legal experts, and secured funding, the project is poised for implementation. The initial phase will assess the diary project's effectiveness in mitigating PICS symptoms among pediatric ECMO survivors and their families.

Anticipating success, the team envisions expanding the project to include non-English options and extending its application to diverse pediatric populations beyond ECMO. Sharing the results through conferences and journals, they hope to contribute valuable insights to the broader pediatric critical care community, emphasizing the potential of ICU diaries in improving outcomes for young intensive care unit survivors.

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ECMO Diaries: Can we reduce the symptoms of pediatric PICS through bedside journaling?