HomeVENT (Home Values and Experiences Navigation Track)

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PROJECT SUMMARY/ ABSTRACT The number of children with medical complexity is increasing as medical advances reduce mortality from serious illnesses like prematurity, cardiac anomalies, and genetic syndromes. Some of these children have respiratory insufficiency and their families face decisions about tracheostomy and home ventilation. These children utilize the most pediatric healthcare resources, have recurrent, prolonged hospitalizations and limited life expectancies. They and their families are at risk of reduced quality of life including limited mobility, social isolation, financial instability, and mental strain. Families and clinicians alike feel unprepared to weigh the benefits and burdens of home ventilation for such children. Consistent, intentional approaches to decision- making are uncommon, with nearly half of families not even recognizing there is a choice. HomeVENT (Home Values & Experiences Navigation Track) is a deliberative decision-support process for families and clinicians. First, HomeVENT uses a structured family deliberation for families to integrate their home life context and values into decisions about home ventilation. This intervention is anchored in a novel web-based tool that meets a key counseling gap: family-to-family information. Second, HomeVENT includes a novel structured team deliberation tool to help large, multidisciplinary clinical teams jointly assess a child's treatment options in light of the family's home context and values. Preliminary data from 30 families suggests families and clinicians engaged in HomeVENT felt more prepared to make decisions about home ventilation. We will recruit 150 English- or Spanish-speaking families (n=300 parents) and two clinicians per family (n=300 clinicians) in a pre/ post cluster design at 4 geographically diverse institutions. Eligibility is triggered by a child's need for a tracheostomy/ home ventilation decision within a month. Outcomes will be assessed at 1, 6 and 12 months. The primary outcome is family preparedness for decision-making (via PrepDM); secondary outcomes include family and clinician perception of shared decision-making, and long-term family regret and quality of life. We will do an exploratory analysis of cases where there was conflict or challenges with the home ventilation decision, examining child and family outcomes in these scenarios. All Aims include analysis for role of health equity (race/ ethnicity, income, rural vs. urban) in decision-making about Pediatric home ventilation. The impact of this proposed research will be to improve the quality of family and clinician decision-making about pediatric medical technology—decisions needed more frequently as pediatric medical care advances. This research, focused on home ventilation, has far-reaching potential to transform decision processes and outcomes for children with complex illness. Findings will inform development of similar decision supports for other technologies, from home dialysis to feeding tubes.