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Children with medical complexity (CMC) are a small but significant and growing population within pediatric health care. Defined as children that have one or more chronic conditions, functional impairment, substantial needs that create a significant impact on the family, and high health care resource utilization,1 CMC are increasingly recognized as needing their own research agenda. Recent analyses have highlighted areas for further research, including quality outcomes, care models, health care utilization, social determinants of health, family resilience, and transitions to adult medicine.1–3
There is a growing body of evidence on primary care models for CMC, including some that shows the medical home model works.4–6 To date, this research on the medical home has focused only on CMC themselves.5–7 Research on CMC families has looked only at parents, finding increased stress, financial and social hardship, and long-term negative health outcomes.8–10 The existing research on siblings has focused primarily on psychosocial (not medical) wellbeing.11,12 The research suggests that siblings are at higher risk for anxiety, depression, behavioral difficulties, and school difficulties; may conceal or suppress their needs and emotions; and learn to develop coping strategies. However, this research does not look at siblings of CMC specifically, focusing instead on siblings of children with specific illnesses (such as cancer, cystic fibrosis, sickle cell disease, or neurologic impairment) or the siblings of those with (variously defined) chronic illnesses.13–18
To our knowledge, existing literature does not examine the primary care needs of siblings of CMC and whether the medical home is appropriately addressing them. To address this research gap and contribute to the previously identified research agenda for CMC,1,2 we set out to identify the siblings of CMC and understand the care they receive in the medical home. We aimed to assess the preventative care status and medical home use of these siblings followed in four academic pediatric medical homes of the New York Presbyterian Ambulatory Care Network.
Methods
We conducted a descriptive retrospective chart review of siblings of children with medical complexity and non-siblings matched by age and medical home.
The New York Presbyterian Ambulatory Care Network affiliated with Columbia University Irving Medical Center consists of four pediatric primary care medical homes. Twenty-four faculty and 78...