Published: 2021-02-23

Children with complex chronic conditions: an evaluation from the standpoint of academic publications

Karinne M. Carvalho, Mariana S. N. de Carvalho, Rafaela L. Grando, Livia A. de Menezes


Children with complex chronic conditions (CCC) belong to a distinct pediatric group, characterized by the (potential) manifestation of a wide range of pathologies requires long-term multidisciplinary health care, alongside recurrent hospitalizations and, in many cases, dependent on the use of technology for life maintenance. The need to seek, organize and disseminate bibliographic information on CCC led us to chart the scientific production on this theme, and a complete search of the academic publications was conducted in two scientific databases, the Web of Science and Scopus. The results indicate a significant growth in CCC research over the years, matching both, the increased number of cases and the consequent rise in life expectancy of these children. The scientific production on CCC is concentrated in the United States of America, reflecting and discussing the access to the health system of that country. We observed that the main thematic areas of the publications were related to hospitalization, health needs, coordination of care and oral health. Children have inequitable levels of access to treatment for CCC, according to family income, place of residence, educational level, race/ethnicity, evidencing the urgent need for formulation and implementation of public policies that address this portion of the population. Thus, it is expected that the present study will serve as a bridge guide for the development of potential new research projects, actions to promote and stimulate studies on this relevant theme and so far, neglected.


Children with complex chronic conditions, Life-limiting illness, Childhood disability, Bibliometric mapping

Full Text:



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;102(1):137-40.

Adams K, Corrigan JM. Priority Areas for National Action: Transforming Health Care Quality. Institute of Medicine (US) Committee on Identifying Priority Areas for Quality Improvement. Washington (DC): National Academies Press (US); 2003.

Feudtner C, Hays RM, Haynes G, Geyer JR, Neff JM, Koepsell TD. Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services. Pediatrics. 2001;107(6):99.

Organização Mundial da Saúde (OMS). Cuidados inovadores para condições crônicas: componentes estruturais de ação: Relatório Mundial. Brasília, 2003.

Gomes MASM. Saúde da Criança e do Adolescente no Brasil: realidade e desafios. Residência Pediátrica. 2011;1:35-7.

Feudtner C, Feinstein JA, Zhong W, Hall M, Dai D. Pediatric complex chronic conditions classification system version 2: updated for ICD-10 and complex medical technology dependence and transplantation. BMC Pediatrics. 2014;14:199.

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;127:529-38.

Spratling R. Defining technology dependence in children and adolescents. Western J Nurs Res. 2015;37:634-51.

Moreira MEL, Goldani MZ. A criança é o pai do homem: novos desafios para a área de saúde da criança. Ciência & Saúde Coletiva. 2010;15:321-7.

Goldani MZ. The impact of demographic and epidemiological transition in the health of children and adolescents in Brazil. Rev HCPA & Fac Med Univ Fed Rio Gd do Sul. 2012;32:49-57.

Gomes MASM. As políticas públicas na área da saúde da criança. Ciência & Saúde Coletiva. 2010;15:329-30.

Carvalho MSN de. Desospitalização de crianças com condições crônicas complexas: perspectivas e desafios. In: Desospitalização de crianças com condições crônicas complexas: perspectivas e desafios. 2019.

Brasil. Ministério da Saúde. Portaria No 1.130, de 05 de agosto de 2015. Institui a Política Nacional de Atenção Integral à Saúde da Criança (PNAISC) no âmbito do Sistema Único de Saúde (SUS). 2015.

Cohen, E. Status complexicus? The emergence of pediatric complex care. Pediatrics. 2018;141:202-11.

Berry JG. The landscape of medical care for children with medical complexity. Overland Park, KS: Children’s Hospital Association. 2013;7.

Lin JL, Cohen E, Sanders LM. Shared decision making among children with medical complexity: results from a population-based survey. J Pediatr. 2018;192:216-22.

Kuo DZ. Recognition and management of medical complexity. Pediatrics. 2016;138:20163021.

Van Eck N, Waltman L. Software survey: VOSviewer, a computer program for bibliometric mapping. Scientometrics. 2010;84:523-38.

Van Eck N, Waltman L. How to normalize co-occurrence data? An analysis of some well‐known similarity measures. J Am Soc Information Sci Technol. 2009;60:1635-51.

Bjur KA, Wi CI, Ryu E, Crow SS, King KS, Juhn YJ. Epidemiology of Children With Multiple Complex Chronic Conditions in a Mixed Urban-Rural US Community. Hosp Pediatr. 2019;9(4):281-90.

Moreira MCN. Guidelines for a line of care for children and adolescents with complex chronic health conditions. Cadernos de Saúde Pública. 2017;33.

Hall DE. The care of children with medically complex chronic disease. J Pediatr. 2011;159:178-80.

World Health Organization. Preparing a health care workforce for the 21st century: the challenge of chronic conditions. World Health Organization 2005.

Rodrigues JLSQ, Portela MC, Malik AM. Agenda para a pesquisa sobre o cuidado centrado no paciente no Brasil 2019.

United States. Centers for Medicare & Medicaid Services. Children's Health Insurance Program. Available at: Accessed on: 25 July 2020.

Musumeci M, Foutz J. Medicaid’s role for children with special health care needs: a look at eligibility, services, and spending. Henry J Kaiser Family Foundation. 2018;22.

Elixhauser A, Machlin SR, Zodet MW, Chevarley FM, Patel N, McCormick MC, Simpson L. Health care for children and youth in the United States: 2001 annual report on access, utilization, quality, and expenditures. Ambul Pediatr. 2002;2(6):419-37.

Newacheck PW, Kim SE. A national profile of health care utilization and expenditures for children with special health care needs. Arch Pediatr Adolescent Med. 2005;159:10-7.

Simon TD, Berry J, Feudtner C, Stone BL, Sheng X, Bratton SL, et al. Children with complex chronic conditions in inpatient hospital settings in the United States. Pediatrics. 2010;126(4):647-55.

Neff JM, Sharp VL, Muldoon J, Graham J, Myers K. Profile of medical charges for children by health status group and severity level in a Washington State Health Plan. Health Serv Res. 2004;39(1):73-89.

Berry JG, Agrawal R, Kuo DZ, Cohen E, Risko W, Hall M, et al. Characteristics of hospitalizations for patients who use a structured clinical care program for children with medical complexity. J Pediatr. 2011;159(2):284-90.

Cohen E. Patterns and costs of health care use of children with medical complexity. Pediatrics. 2012;130:1463-70.

Casey PH, Lyle RE, Bird TM, Robbins JM, Kuo DZ, Brown C, et al. Effect of hospital-based comprehensive care clinic on health costs for Medicaid-insured medically complex children. Arch Pediatr Adolesc Med. 2011;165(5):392-8.

Carlton EF, Barbaro RP, Iwashyna TJ, Prescott HC. Cost of Pediatric Severe Sepsis Hospitalizations. JAMA Pediatr. 2019;173(10):986-7.

Peltz, A. Hospital utilization among children with the highest annual inpatient cost. Pediatrics. 2016;137.

Berry JG, Hall M, Neff J, Goodman D, Cohen E, Agrawal R, Kuo D, Feudtner C. Children with medical complexity and Medicaid: spending and cost savings. Health Aff (Millwood). 2014;33(12):2199-206.

Markham JL, Hall M, Gay JC, Bettenhausen JL, Berry JG. Length of Stay and Cost of Pediatric Readmissions. Pediatrics. 2018;141(4):20172934.

Pérez-Ardanaz B, Morales-Asencio JM, García-Piñero JM, Lupiáñez-Pérez I, Morales-Gil IM, Kaknani-Uttumchandani S. Socioeconomic Status and Health Services Utilization for Children With Complex Chronic Conditions Liable to Receive Nurse-Led Services: A Cross-Sectional Study. J Nurs Scholarsh. 2019;51(5):518-25.

Dias BC. Challenges of family caregivers of children with special needs of multiple, complex and continuing care at home. Escola Anna Nery. 2019;23.

Dionísio R. Papel de cuidador no contexto da hospitalização domiciliária: diagnóstico, implementação e monitorização de intervenção. Revista INFAD de Psicologia. Int J Develop Educ Psychol. 2019;1:365-72.

Cheng N, Ma J, Ding W, Zhang Y. Effects of caregiver-involved interventions on the quality of life of children and adolescents with chronic conditions and their caregivers: a systematic review and meta-analysis. Qual Life Res. 2019;28(1):13-33.

Foster CC, Agrawal RK, Davis MM. Home health care for children with medical complexity: workforce gaps, policy, and future directions. Health Affairs. 2019;38:987-93.

Toledano-Toledano F, Domínguez-Guedea MT. Psychosocial factors related with caregiver burden among families of children with chronic conditions. Bio Psycho Social Med. 2019;13:6.

Nelson, LP. Unmet dental needs and barriers to care for children with significant special health care needs. Pediatr Dentistr. 2011;33:29-36.

Oredugba FA, Akindayomi Y. Oral health status and treatment needs of children and young adults attending a day centre for individuals with special health care needs. BMC Oral Health. 2008;8:30.

Du RY, Yiu CKY, King NM. Oral health behaviours of preschool children with autism spectrum disorders and their barriers to dental care. J Autism Develop Disord. 2019;49:453-9.

Wilson NJ. Oral health status and reported oral health problems in people with intellectual disability: A literature review. J Intellect Develop Disability. 2019;44:292-304.

Casamassimo PS, Seale NS, Ruehs K. General dentists' perceptions of educational and treatment issues affecting access to care for children with special health care needs. J Dent Educ. 2004;68:23-8.

Norwood KW Jr, Slayton RL, Council on Children With Disabilities, Section on Oral Health. Oral health care for children with developmental disabilities. Pediatrics. 2013;131(3):614-9.

Craig MH, Scott JM, Slayton RL, Walker AL, Chi DL. Preventive dental care use for children with special health care needs in Washington's Access to Baby and Child Dentistry program. J Am Dent Assoc. 2019;150(1):42-8.

Oredugba FA, Akindayomi Y. Oral health status and treatment needs of children and young adults attending a day centre for individuals with special health care needs. BMC Oral Health. 2008;8:30.

Mouradian WE, Wehr E, Crall JJ. Disparities in children's oral health and access to dental care. JAMA. 2000;284:2625-31.

Zhou N, Wong HM, Mcgrath C. Oral health and associated factors among preschool children with special healthcare needs. Oral Dis. 2019;25:1221-8.

Martin AB, Brand M. Oral Health Chronic Disease Integration: The Call for a New Public Health Systems Approach for Dental Research. Madridge J Dent Oral Surg. 2016;1:21-2.