What does it mean to be a medically complex patient?

Medically complex conditions require an integrated approach to care

Everyone deserves to live a productive and fulfilling life, but that can be difficult for individuals with medically complex conditions. Medical complexity is defined as having multiple chronic physical conditions with co-occurring behavioral or mental health challenges, many medications, multiple providers, frequent hospitalizations, or limited abilities.¹

Finding a multifaceted, integrated approach to care that addresses the whole person is a formidable task, and without the proper resources and support, it can lead to fragmented treatment and an additional strain on the financial and emotional resources of all involved.²

A deeper understanding of medically complex conditions is integral to addressing not only the scope of challenges these individuals face today, but also the steps being taken to help them live their lives to the fullest.

How are complex medical conditions diagnosed?

A significant portion of the overall U.S. population faces complex medical challenges. Among children specifically, roughly 14 million have special healthcare needs, and among those ages 3 to 17, 51% have a concurrent mental health or behavioral diagnosis, such as ADHD, depression, or anxiety. ^4,5

Because a complex medical condition is different from other medical conditions, in that it has multiple characteristics that affect several systems simultaneously, diagnosis is often a complex process in and of itself. It involves identifying co-occurring severe chronic conditions that affect multiple organ systems, and that result in functional limitations, ongoing use of medical technology, and high healthcare needs or utilization.²

Adding to the complexity of both diagnosis and treatment is that the manifestation of symptoms for medically complex conditions will vary greatly from person to person.⁶ This requires not only the need for individualized, integrated care but also the resources to manage these conditions and improve quality of life.

18%

of patients in primary healthcare have complex medical needs³

Common complex medical conditions

The following conditions are among the most common types of complex disorders that overlap with additional diagnoses.

Cerebral palsy

Congenital cardiac
disturbances

HIV/
AIDS

Spina bifida

Chronic lung
diseases

Congenital anatomical
malformations

Prematurity and resulting
complications

Sickle cell disease

Neurological trauma
and pathologies

Congenital cardiac
disturbances

Intellectual
disability

Orthopedic and
respiratory diseases

Genetic diseases

Psychological
disorders

Short bowel syndrome

Developmental delay ^7,8

What complications do children with medically complex conditions experience?

Adolescents with chronic health issues are at a greater risk of co-occurring mental health disorders, which are often related to their medical conditions.⁹

Living with pain and fatigue, combined with a perceived lack of control over symptoms, the inability to engage in activities of daily life, feeling different or rejected by peers, medication side effects, and even the overprotection or rejection of a parent can result in frustration, anxiety, and depressive symptoms.^10,11

Young adults with medically complex conditions are also more likely to be diagnosed with anxiety and depression than those without chronic diseases. But there is an added layer of complication in that around one million children with complex healthcare needs transition to adult care every year.¹² Given the inherent challenges in navigating the adult healthcare system and managing their treatment, it’s critical that they’re provided proper support — physical and psychological — during this transition.

13

physicians &

6

The average number of clinicians treating medically complex children¹³

How does medical complexity affect families?

When it comes to that treatment, the caregivers of children with medical complexity often face myriad challenges themselves, not just in finding, navigating, and providing the required care, but also learning about the conditions, technology, and specific care they require on a daily basis.² This is on top of juggling other family and often professional needs at the same time.

The larger the treatment team, the greater amount of appointments and communication the caregiver needs to coordinate and manage, and the greater amount of training that would (ideally) be required as it relates to medical terminology, proper use and cleaning of technology like feeding tubes and ventilators, and the often complex schedule of multiple medications.⁷

Treatment of medically complex conditions also poses a financial hurdle, as while these children represent less than 1% of the pediatric population, they account for almost a third of the combined pediatric expenses for all healthcare.¹⁴ Over 68% of families with medically complex children reported financial hardship, and just over 54% shared that a family member stopped working because of the child’s health.^15,16

While caring for children with complex needs can be extremely rewarding, it also takes a toll on the physical, emotional, and psychological health of the caregivers themselves, with around 20% of caregivers of children with medically complex conditions reporting poor or fair mental health — which is five times greater than is reported by parents of children who did not have medical problems.¹⁷

13

physicians &

6

sub-specialists

The average number of clinicians treating medically complex children¹³

What challenges do adults with medically complex conditions face?

For many people, managing one chronic health problem is challenging. For adults who are living with two or more chronic medical and psychological conditions, managing symptoms and professional responsibilities can be overwhelming. Additional hurdles include securing sufficient financial resources, finding social support, and coordinating treatment among multiple doctors.¹⁸ Whereas children have caregivers, most adults with medically complex conditions must manage their own care, which can be difficult if symptoms impair their ability to function and complete daily tasks.

People with multiple chronic conditions report feeling depressed, anxious, and emotionally unstable¹⁸

Because they’re often required to manage their own care, a lack of social support was cited as an obstacle to self-care.¹⁹ However, some reported that when family and friends did become involved in treatment plans, those dealing with medically complex conditions felt a loss of independence and reported it “hindered [their] ability to self-manage or feel confident in managing their conditions.”¹⁸

90%

of healthcare costs in the U.S. are for people with chronic and mental health conditions²⁰

Part of managing those conditions is also managing the financial piece of the puzzle, which often includes multiple medications, home healthcare equipment, and the treatment appointments themselves. According to the Centers for Disease Control and Prevention (CDC), 90% of the more than $4 trillion in healthcare costs in the U.S. are for people with chronic and mental health conditions, and studies have found that the more chronic conditions a person has, the greater the probability of having unpaid debts, poor credit scores, and bankruptcy.^20,21

Much like caregivers of medically complex children must become educated about the child’s conditions, adults who are living with co-occurring health issues also want to be informed enough to prioritize self-care and advocate for themselves. However, patients have cited challenges in communication with their treatment teams, especially when they have to deal with multiple people who might be providing conflicting instructions and strategies for management of their conditions.¹⁸ This could be especially problematic when it comes to the importance of understanding various medications and possible side effects and interactions.

How to treat medically complex conditions

All of these factors — whether present in children or adults — highlight the need for an integrated care approach, characterized as “a high degree of collaboration and communication among health professionals,” which can include nurses, physicians, psychologists, and a variety of sub-specialists required to adequately address the needs of the patient.²²

Care coordination efforts could save as much as

$240 billion

in annual healthcare costs

This approach helps team members share information regarding patient care, working together to create a comprehensive management strategy that addresses not just one aspect of healthcare, but the medical, behavioral, and mental health needs of each individual. Studies have shown that collaboration between interdisciplinary teams improves treatment outcomes, and that having the support of a care coordinator to advocate for them greatly improved the health-related quality of life for caregivers of children with medical complexity.^{24, 25}

Caring for the whole person at Nexus Health Systems

At Nexus, we understand not only the physical, behavioral, and mental health services required to care for medically complex patients, but also the support required for every individual and their families. Our network includes a variety of physical medical care, rehabilitation services, and psychiatric treatment services all in one place, providing a continuum of care tailored to their evolving needs on their journey to meaningful healing.

Those specialized programs address multiple disciplines, whether it’s training for caregivers when the patient transitions back home, physical rehabilitation after a complex injury or illness, or working through challenging behavioral issues and co-occurring medical needs. This comprehensive approach provides an environment necessary to heal the whole person, helping mend bodies and minds so they can live the life they deserve.