Pediatric Complex Care RCSIsmj staff writer Stephanie Tung
Children with medical complexity (CMC) are a fast growing group of heterogeneous children who face substantial clinical obstacles in their journey through the health care system. CMC are increasing in prevalence likely due to the medical successes in survivorship of premature infants (1), those born with congenital anomalies (2) and/or chronic conditions (3) as well as improved acute illness treatments (4). Coincidentally, this increase in survivorship has also resulted in increasing rates of complications and childhood disability (5) in adittion to increased techonology usage (6) and coordinated medical care needs. (7)
CMC represent approximately 1% of the pediatric patient population but account for 30% of pediatric health care costs in the United States, which has a significant impact on the pediatric heath care system. (8) According to a framework published in the American Academy of Pediatrics (AAP) in 2011 (9), medical complexity can be characterized by four cardinal domains: 1) chronic, severe health conditions; 2) significant health service needs; 3) major functional limitations; and 4) projected high health resource utilization. Examples of CMC include children who have congenital or acquired multisystem disease, a severe neurologic condition with substantial functional impairment and/or technology dependence for activities of daily living.
CMC are medically frail and have intensive care needs that are not easily met by pre-existing health care models, therefore are at risk of poor health and family outcomes. In general, the care CMC receive is frequently fragmented and uncoordinated across community, outpatient and inpatient settings with a lack of communication and proactive care planning. The optimal model of care proposed for CMC should encompass the following attributes: accessible, comprehensive and coordinated (8). Due to the increased likelihood of CMC experiencing complications such as acute illnesses and technological malfuncions that if not addressed promptly would lead to a rapid health decline. It is essential for CMC to have access to an outpatient clinical site that can urgently address their health care needs either in person or over the phone. (8) It is anticipated that the availability of such a service would help minimize emergency department visits, hospitalizations and readmissions.
The need for comprehensive care stems from the fact that CMC have multiple health problems that interact with each other and needs to be assessed from the context of the child’s overall health and well-being. This comprehensive assessment by a healthcare provider would enable proactive care planning to anticipate future crises and minimise over-treatment or the need for emergency care. (8) Given that CMC often have chronic medical conditions affecting multiple orgam systems, which involves the care of multiple specialty pediatricians, there is a high potential for interactions between different treatment plans. It is crucial for medical decisions to be coordinated among the members of the child’s health care team to ensure appropriate plans are implemented in the context of the child’s well-being. (8)
Numerous strategies have emerged to improve the quality of care for CMC including enhancing existing primary care practices (10) and introducing tools to assist with care planning such as “medical passports”, developing both inpatient and outpatient clinical (complex care) programs (11) dedicated to serving CMC and integrating community-based services for CMC. Needless to say, a lot more work needs to be done to maximize the quality of healthcare provided to CMC and to help ease the transition of these children over into adult services as they continue to grow. (12, 13)
*Editor’s Note: For a full-length review of the complexites caused by increasing multimorbidity in paediatric care, see the 10th edition of the RCSIsmj (available online now).
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. Ment Retard Dev Disabil Res Rev. 2002;8(4):258-72
2. Tennant PW, Pearce MS, Bythell M, Rankin J. 20-year survival of children born with congenital anomalies: a population-based study. Lancet. 2010;375(9715):649-56.
3. Wong LY, Paulozzi LJ. Survival of infants with spina bifida: a population study, 1979-94. Paediatr Perinat Epidemiol. 2001;15(4):374-8.
4. 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. Crit Care Med. 2000;28(11):3718-21.
5. Thompson JR, Carer RL, Edwards AR, Roth J, Ariet M, Ross NL, et al. A population-based study of the effects of birth weight on early developmental delay or disability in children. Am J Perinatol. 2003;20(6):321-32.
6. Glendinning C, Kirk S, Guiffrida A, Lawton D. Technology-dependent children in the community: definitions, numbers and costs. Child Care Health Dev. 2001;27(4):321-34.
7. Stille CJ, Antonelli RC. Coordination of care for children with special health care needs. Curr Opin Pediatr. 2004;16(6):700-5.
8. Berry JG, Agrawal, R. K., Cohen, E., Kuo, D. Z.. The Landscape of Medical Care for Children with Medical Complexity. Children’s Hospital Association: Children’s Hospital Association; 2013.
9. Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SK, Simon TD, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011;127(3):529-38.
10. Gordon JB, Colby HH, Bartelt T, Jablonski D, Krauthoefer ML, Havens P. A tertiary care-primary care partnership model for medically complex and fragile children and youth with special health care needs. Arch Pediatr Adolesc Med. 2007;161(10):937-44.
11. Cohen E, Friedman JN, Mahant S, Adams S, Jovcevska V, Rosenbaum P. The impact of a complex care clinic in a children’s hospital. Child Care Health Dev. 2010;36(4):574-82.
12. Betz CL. Transition of adolescents with special health care needs: review and analysis of the literature. Issues Compr Pediatr Nurs. 2004;27(3):179-241.
13. Betz CL. Health care transition for adolescents with special healthcare needs: where is nursing? Nurs Outlook. 2013;61(5):258-65.