Children with Medical Complexity

Original Editor - Franca Ebomah

Top Contributors - Franca Ebomah and Kim Jackson  

Introduction[edit | edit source]

The term complexity comes from the Latin word "complexus" and it means something twisted and made up of many interdependent parts[1]The definition of children with medical complexity (CMC) is unclear, however, the Maternal and Child Health Bureau defines it as any child or youth affected or at risk of having a pathology capable of affecting neurologic development, chronic behavioral or emotional problems, and who need more intensive healthcare more than children require. [2]

Characteristics[edit | edit source]

CMC is the most complex form of 'Children with Special Health care needs ' (CSHCN) and consists of four characteristics[3]:

  1. Presence of one or more severe, multisystem, and complex chronic conditions
  2. Significant functional limitation and dependency on polypharmacy and technology such as tracheostomies and feeding tubes
  3. High health care utilization
  4. High health care service needs such as home care provision and care coordination resulting in huge social and financial burden on family

Prevalence[edit | edit source]

  • There has been a growing prevalence of CMC as a result of: 1. increase survival rates of infants born prematurely[3] 2. increase survival rates of those born with congenital anomalies [4] 3. advancement in treatment for acute illnesses such as intensive care[5]
  • In Canada and the USA, CMC make up are < 1% of the total pediatric population[6]

Framework of CMC[edit | edit source]

Chronic conditions of childhood like CMC can characterized under 4 broad domains: needs, chronic conditions, functional limitations and healthcare use.[7]

  1. Needs: CMC require substantial medical care, specialized therapy and educational needs.[7]These service needs impact the family unit significantly most especially in the following ways: time devoted to direct care, frequent hospital visits, care coordination and financial burden.[7]
  2. Chronic condition(s): CMC have at least one diagnosed or unknown chronic medical condition(s). These conditions are typically severe and associated with high morbidity and mortality rate.[7]
  3. Functional limitations: CMC have severe limitations and require technological aid such as wheel chairs, tracheostomy tubes or feeding tubes[7]
  4. Healthcare use: CMC typically frequent or prolonged hospitalization, multiple surgeries or continuous engagement of multiple subspecialty services and providers.[7]

Clinical Examples of CMC[edit | edit source]

Domains[7] Type of complexity Child with Severe Neurologic Involvement Child with a Complex Cardiac Condition Child with Severe Autism
Needs Medical problems Multiple organ affectation; Requiring multiple medications and surgeries Brain, respiratory and gastrointestinal affectation; Requiring multiple medication and surgery Brain affectation; Antiepileptic medication and other neuropsychiatric drugs
Family identified problems Financial burden; respite; education; support Financial burden; respite; education; support Financial burden; respite; education; support
Conditions Congenital brain anomalies; chromosomal anomalies; other genetic syndromes; acquired brain injury; neurodegenerative metabolic disease; hypoxic-ischemic encephalopathy; cerebral palsy with global developmental delay; etc Hypoplastic left heart syndrome; double-inlet left ventricle, other congenital heart diseases; heart transplantation; etc May be associated with other conditions (eg, tuberous sclerosis, other neurologic conditions)
Functional Limitations Developmental disability Motor, speech, feeding, and social affectation Motor and feeding affectation with variable social and speech affectation Speech and social impairments with variable motor and feeding affectation.
Technology dependence Yes Variable Variable but can be completely reliant on others for activities of daily living
Health care utilization Providers pediatrician; neurologist; gastroenterologist; pulmonologist; otolaryngologist; developmental pediatrician; general surgeon; orthopedic surgeon; neurosurgeon;

Physiotherapist; occupational therapist; social worker; speech/language pathologist; dietician; nurses; pharmacist

pediatrician; cardiologist; cardiac surgeon; pulmonologist; a large number of others; Physiotherapist; occupational therapist; social worker; speech/language pathologist; dietician; nurses; pharmacist pediatrician; neurologist; developmental pediatrician; psychiatrist; Social worker; physiotherapist; occupational therapist; speech/language pathologist; nurses; pharmacist; mental health professionals

Relevance to Physiotherapy[edit | edit source]

Care coordination has been identified as a potential way to improve care of Children with Special Health Care Needs (CSHCN)[8]It can be defined as a system that effectively connects CSHCN and the families to health care services and providers in order to maximize the children's potentials and improve their overall health[9]

Physiotherapist play varied roles in care coordination such as: Primary care coordinator, Care coordination team member, advocacy and research.[10]

  1. Primary care coordinator: This involves taking the lead and being the most frequent service providers. [11]To perform this role, physiotherapists need to have experience working in community-based pediatrics care, have leadership and advocacy skills. Responsibilities include: providing family-centered services, seeking out and connecting families to community resources, building relationships with families and professionals, developing a care plan for families, and facilitating teamwork between all professionals involved in the child's care[11].
  2. Research: Physiotherapists could participate in studies aimed at developing validated tools to measure care coordination and its effect on the lives of these patients and their families.[11]
  3. Care coordination team member: With their expanded knowledge, as a team member, physiotherapists can tailor exercise programs to help children move and play, prevent secondary conditions, and promote wellness, fitness, and quality of life.[11]
  4. Advocacy: Physiotherapists can promote care coordination by talking to families, coworkers, and employers about needed care coordination activities and its benefits. Physiotherapists could also correspond with local, state, and national representatives to provide input on upcoming health care legislation to support the need for care coordination. [11]

References[edit | edit source]

  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. 3.0 3.1 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. 7.0 7.1 7.2 7.3 7.4 7.5 7.6 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. 11.0 11.1 11.2 11.3 11.4 McAllister JW, Presler E, Cooley WC. Practice-based care coordination: a medical home essential. Pediatrics. 2007 Sep 1;120(3):e723-33.