There is a growing population of children with medical complexity (CMC) who require intensive daily care including multiple medications and medical technology and equipment. Despite these complex care needs and national gaps in home-based supports (eg, home nursing, respite), there is an assumption that parents should want to and be able to care for their child at home. Yet some families, for a variety of reasons, choose to explore other placement options for their child. The decision to place a child in a long-term care facility is one of the hardest a parent may ever make, and one where they are likely to seek guidance from their pediatrician regarding local availability, drawbacks, and benefits, and expected outcomes. This is a call for the evidence to inform that guidance.

Currently no definitive data exist around even the most basic pediatric long-term care metrics: number of facilities, locations, and proportion of CMC...

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