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. [2]
Characteristics[3][edit | edit source]
CMC is the most complex form of 'Children with Special Health care needs ' and consists of four characteristics:
- Presence of one or more severe, multisystem, and complex chronic conditions
- Significant functional limitation and dependency on polypharmacy and technology such as tracheostomies and feeding tubes
- High health care utilization
- 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[4] 2. increase survival rates of those born with congenital anomalies [5] 3. advancement in treatment for acute illnesses such as intensive care[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]
- 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]
- 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]
- Functional limitations: CMC have severe limitations and require technological aid such as wheel chairs, tracheostomy tubes or feeding tubes[7]
- 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 | 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 |
References[edit | edit source]
- ↑ Gallo M, Agostiniani R, Pintus R, Fanos V. The child with medical complexity. Italian Journal of Pediatrics. 2021 Dec;47(1):1-7.
- ↑ 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.
- ↑ Dewan T, Cohen E. Children with medical complexity in Canada. Paediatrics & child health. 2013 Dec 1;18(10):518-22.
- ↑ 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.
- ↑ 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.
- ↑ 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.
- ↑ 7.0 7.1 7.2 7.3 7.4 7.5 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.
