In March 2017, Ms. Coleman’s daughter Justice Hope, who was medically complex and had multiple disabilities, died at age 11. She was the sunshine in the lives of many and communicated using a thousand smiles.
Over the past 10–15 years, researchers and providers have begun to focus on the small but growing population of children with medical complexity (CMC). Much of the focus has been on the medical aspects of complexity in terms of the number and type of diagnoses, use of technology, and frequency of interactions with medical care. But what of the neurodevelopmental and mental health of CMC? Do children with complex chronic medical conditions have co-occurring neurodevelopmental and mental health diagnoses?
There are general data about the number of children with mental health conditions, but little is known specifically about the neurodevelopmental and mental health of CMC. An article in this month’s Pediatrics, “Neurodevelopmental and Mental Health Conditions in Children with Medical Complexity,” by Leyenaar et al. studies insurance claims in search of answers (10.1542/peds.2024-065650).
How did the authors look at this topic?
The authors looked back at “all-payer claims” across Medicaid and employee-sponsored commercial insurance plans in Colorado, New Hampshire, and Massachusetts in 2012–2017. The authors used a tool called the Child and Adolescent Mental Health Disorders Classification System to estimate the prevalence of neurodevelopmental and mental health diagnoses in CMC compared to children without medical complexity and investigate associations between these diagnoses in CMC, health system use, and in-hospital mortality. The study included a total of 85,581 CMC.
What did the study find?
The article contains many findings, including:
- 46% of CMC had one or more neurodevelopmental diagnoses.
- 37% of CMC had one or more mental health diagnoses.
- Neurodevelopmental and mental health diagnoses in CMC were more than two times as frequent than in children without medical complexity.
- CMC with both neurodevelopmental and mental health diagnoses had 3 times the number of ambulatory visits, 69% more ED visits, 58% greater risk of hospitalization, and 2.32 times the number of hospital days than CMC without these diagnoses.
The article presents the data in several ways, including two tables that are easy to understand.
What does the commentary say about the study?
A commentary, entitled “Complexity Plus: The Importance of Co-Occurring Conditions in Children with Medical Complexity,” by Dr. Nicolas Oreskovic from Massachusetts General Hospital and Dr. Eyal Cohen from the Hospital for Sick Children in Toronto (10.1542/peds.2024-067259), accompanies the above article. Drs. Oreskovic and Cohen emphasize that despite some limitations, the Leyenaar study helps to show the scope of increased risk for co-occurring neurodevelopmental and mental health conditions in CMC, and they call for increasing support services for CMC and their families to be a central focus of advocacy and policy. For example, they point out that current payment models discourage pediatric care teams from assessing the need for and providing mental health and developmental supports and services. They urge that creating coordinated complex care delivery models that embed mental health and developmental support services in primary care or during acute hospitalizations could help address such barriers to care. The commentary notes the existing lack of mental health providers, and emphasizes that investments in care or a restructuring of current financing models are required for CMC and their families to overcome barriers to care and obtain needed resources for addressing the important challenges of co-occurring mental and developmental health conditions.
What can you do with these articles?
- If you have a CMC, read the articles.
- Share these articles with all the providers who care for your CMC, including specialists and mental health. If you have concerns about the neurodevelopmental or mental health of your CMC, use these articles to start conversations with your child’s doctors.
- If you work or volunteer in an advisory or paid partnership capacity in children’s health care focused on CMC, use these articles to talk about the need for whole-child care—including medical and mental health.
