The National Institutes of Health (NIH) identifies “complex patients” as those with complex healthcare needs, multiple chronic conditions, many medications, multiple providers, frequent hospitalizations, and limited abilities1. They noted there are factors that contribute to patient complexity, from age and cognitive decline to psychiatric disorders and challenging behaviors.
Today’s providers are facing a patient population fraught with complexities, and most commonly, co-morbidities. Individuals with co-occurring diagnoses — like autism, ADHD, and mood dysregulation or spina bifida coupled with psychiatric diagnoses — are often difficult to treat, but when you turn the table and take on the perspective of the patient or caregiver, it’s clear the more extreme challenge lies with them. Finding adequate care that addresses the whole person is arduous and sometimes impossible, leading to fragmented care.
What makes a child medically complex?
Children with medical complexity or CMC may also be referred to as complex chronic or medically complex. Another acronym you may be familiar with is CYSHCN, or children and youth with special health care needs. These labels all stand for a patient population that has chronic physical, developmental, behavioral, and emotional conditions that exceed the typical needs of children their age.1 For example, complex conditions may make it impossible for a child to attend school or participate in recreational activities.
A national profile on healthcare utilization for CMC reported healthcare expenditures that were three times higher, including out-of-pocket expenses2. The American Academy of Pediatrics (AAP) explains that although this patient population represents <1% of children, they account for one-third the total pediatric healthcare costs. It’s also important to note that this percentage accounts for the expanded patient population of children who have medical and/or behavioral conditions impacting multiple bodily systems.2
Technology dependent and medically fragile children
CMC could also mean the patient is technology dependent or could be deemed medically fragile as they receive ongoing care vital to functioning. These round-the-clock services could be provided in a facility or in-home. CMC also refers to patients who rely on communication or assistive devices.
The extensive needs of the medically complex child
The AAP further explains the CMC patient population has extensive needs for health services, experiences functional limitations, and is a group of high resource utilizers3. Although their needs are well documented and extensive, many families of CMC report unmet needs. Limited access to medical subspecialties or comprehensive care programs for physical and psychiatric conditions can make finding adequate care extremely difficult for CMC families.
In an Archives of Pediatrics & Adolescent Medicine journal article profiling CMC caregiver challenges, 56.8% of caregivers reported financial problems, 48.8% reported at least one unmet service need, and 33.1% reported difficulty in accessing nonmedical services4. The article’s conclusion — the majority of healthcare providers don’t have the right system in place for children with special healthcare needs. But why is that the case in 2024?
The AAP goes on to explain that caring for medically complex children requires an effective plan that includes not only healthcare professionals, but also caregivers and the surrounding community. So how do parents and caregivers find complex care providers for a child?
How to find the right type of care for medically complex children
Comprehensive care not only benefits medically complex children; it also benefits the caregivers and the healthcare industry at large. Improved access to whole-person care would likely lead to a decrease in unplanned admissions, emergency department use, caregiver out-of-pocket expenses and lost wages, and missed school days, to name a few potential benefits.
The reality is, the negatives can all be prevented through appropriately coordinated care and all-encompassing programming. Here’s what needs to be in place to truly make a difference in the lives of CMC and their caregivers:
- A multidisciplinary team to take the load off of a single provider
- A single health care provider that provides access to specialists and subspecialists who also coordinate care
- Identifying a care plan that accounts for all conditions and needs
- Local resources and providers
- Programming that provides caregiver education and/or training
Caring for the caregiver of children with complex medical conditions
A national mental health profile of parents of children with medical complexities found that parents of CMC are more likely to report poor or fair mental health. In fact, nearly 20% of parents of CMC reported poor or fair mental health — more than five times the proportion of parents of children who did not have medical problems5. Families of children with complex conditions and serious needs benefit from clinical partners as they navigate care. From adequate training to support groups, caregiver health and wellness services are vital.
If you or someone you know is trying to find care for a medically complex child, consider Nexus Health Systems. With comprehensive programming and a suite of physical, behavioral, and mental health services, our health system may be the right place to handle even the toughest of co-occurring diagnoses. Reach out to learn more or ask questions about a particular case.
Sources
1Definition of patient complexity in adults: A narrative review
3Recognition and Management of Medical Complexity, The American Academy of Pediatrics
5A National Mental Health Profile of Parents of Children With Medical Complexity
