Children with Medical Complexity

The term complexity originates from the Latin word complexus, meaning "something composed of many interdependent parts woven together"¹.

The definition of Children with Medical Complexity (CMC) remains somewhat imprecise. The Maternal and Child Health Bureau defines CMC as any child or adolescent affected by, or at risk of, a condition that may impact neurological development, with chronic behavioral or emotional problems, and requiring more extensive healthcare services than their peers².

Characteristics

CMC represents the most complex subgroup within Children with Special Health Care Needs (CSHCN) and is characterized by four main features³:

• Presence of one or more severe, multisystem chronic conditions, often involving multiple organ systems.

• Significant functional limitations and dependence on polypharmacy and medical technology (e.g., tracheostomy, gastrostomy, CPAP, suctioning).

• High healthcare utilization, including frequent or prolonged hospitalizations.

• Extensive care needs, requiring home care, interdisciplinary follow-up, and coordination services—placing major social and economic strain on families.

Prevalence

The incidence of CMC has increased significantly due to⁴⁵⁶:

• Improved survival of premature infants³

• Increased survival in congenital anomalies⁴

• Advances in intensive care for acute conditions⁵

CMC constitutes less than 1% of the total pediatric population in Canada and the United States⁶.

Framework for CMC

CMC can be organized into four main categories: needs, chronic conditions, functional limitations, and healthcare utilization⁷.

• Needs: Continuous medical follow-up, specialized therapy, and educational accommodations. Families experience high caregiving burden, frequent hospital visits, care coordination, and financial strain.

• Chronic conditions: At least one serious, often lifelong disease with high morbidity and mortality.

• Functional limitations: Severe physical and/or cognitive impairment, often requiring wheelchairs, tracheostomy, or PEG feeding tubes.

• Healthcare utilization: Frequent or prolonged hospitalizations, multiple surgeries, and

  involvement of numerous specialists.

Clinical Examples

Domain	Severe Neurological Disease	Complex Cardiac Disease	Severe Autism
Needs	Multi-organ involvement; medication and surgery dependence	Brain, lung, GI involvement; multiple therapies	Neurological dysfunction; psychiatric medication
Family challenges	Financial strain, respite needs, education, and support	Same as left	Same as left
Conditions	Cerebral palsy, hypoxic-ischemic encephalopathy	Hypoplastic left heart, double inlet ventricle	Tuberous sclerosis, comorbidities
Functional limitation	Impaired motor skills, speech, feeding, social interaction	Varying motor and feeding function	Speech, social, and motor impairment
Technological support	Often required	Variable	Often dependent
Healthcare use	Multidisciplinary care (neurology, physiotherapy, pediatrics)	Cardiology, thoracic surgery	Psychiatry, psychology, special education

Physiotherapy and Care Coordination

Care coordination is a cornerstone of CMC management and is considered an effective approach to optimize health outcomes and functional potential⁸⁹.

Role of the Physiotherapist¹⁰¹¹

• Primary coordinator: Leads the interdisciplinary team and serves as a central contact for families. Responsibilities include creating care plans, managing resources, and facilitating collaboration.

• Team member: Designs exercise and training programs, prevents secondary complications, and promotes quality of life and functional independence.

• Researcher: Contributes to developing validated tools for assessing the effectiveness of coordination interventions.

• Advocate: Promotes the need for coordinated care services among families, colleagues, and policymakers.

Summary

CMC represents a growing group of patients with complex medical and social challenges. Optimal management demands close collaboration between specialists, coordinators, and families.Physiotherapists play an essential role by combining expertise in movement, function, and health promotion, making them key contributors to the holistic care of these children.

References

1. Gallo M, Agostiniani R, Pintus R, Fanos V. The child with medical complexity. Italian Journal of Pediatrics. 2021 Dec;47(1):1-7.

2. McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck PW, Perrin JM, Shonkoff JP, Strickland B. A new definition of children with special health care needs. Pediatrics. 1998 Jul 1;102(1):137-9.

3. Msall ME, Tremont MR. Measuring functional outcomes after prematurity: developmental impact of very low birth weight and extremely low birth weight status on childhood disability. Mental retardation and developmental disabilities research reviews. 2002;8(4):258-72.

4. Tennant PW, Pearce MS, Bythell M, Rankin J. 20-year survival of children born with congenital anomalies: a population-based study. The lancet. 2010 Feb 20;375(9715):649-56.

5. Hallahan AR, Shaw PJ, Rowell G, O’Connell A, Schell D, Gillis J. Improved outcomes of children with malignancy admitted to a pediatric intensive care unit. Critical care medicine. 2000 Nov 1;28(11):3718-21.

6. Berry JG, Agrawal RK, Cohen E, Kuo DZ. The landscape of medical care for children with medical complexity. Overland Park, KS: Children’s Hospital Association. 2013 Jun;7.

7. Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SK, Simon TD, Srivastava R. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011 Mar 1;127(3):529-38.

8. Homer CJ, Klatka K, Romm D, Kuhlthau K, Bloom S, Newacheck P, Van Cleave J, Perrin JM. A review of the evidence for the medical home for children with special health care needs. Pediatrics. 2008 Oct 1;122(4):e922-37.

9. Committee on Children with Disabilities. Care coordination: integrating health and related systems of care for children with special health care needs. Pediatrics. 1999 Oct 1;104(4):978-81.

10. McSpadden C, Therrien M, McEwen IR. Care coordination for children with special health care needs and roles for physical therapists. Pediatric Physical Therapy. 2012 Apr 1;24(1):70-7.

11. McAllister JW, Presler E, Cooley WC. Practice-based care coordination: a medical home essential. Pediatrics. 2007 Sep 1;120(3):e723-33.