Adolescents who have been diagnosed with a mild chronic condition are more likely to experience gaps in health care when transitioning to adult care, according to a study published online ahead of print in Pediatrics.

Eva Goossens, PhD, RN, of the Department of Public Health and Primary Care at KU Leuven-University of Leuven and Research Foundation Flanders in Belgium, and colleagues, conducted a systematic literature review to ascertain potential determinants of care gaps in adolescents with complex chronic conditions (CCCs) during the transition to adulthood.

“Gaps in this transitional process occur in 7% to 21% of young people with acromegaly, 9% to 17% of HIV-infected adolescents, 11% to 24% of patients with type 1 diabetes mellitus, and 7% to 76% of young people with congenital heart disease,” wrote Dr Goossens. “This break … is associated with increased morbidity rates, long-term complications, number of hospitalizations, need for urgent interventions or reinterventions, and higher rates of health-risk behaviors.”

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The researchers identified 10 publications eligible for inclusion in the literature review, reporting on 4 types of CCCs: sickle cell disease, congenital heart disease, congenital adrenal hyperplasia, and juvenile idiopathic arthritis. Median sample size was 227 young people between 10 and 25 years of age.

Ultimately, the researchers identified 11 risk factors and 9 protective factors within 4 broad categories that may be used as determinants of care gaps, within the following categories:

Demographic Characteristics. Relevant characteristics include living independently from parents, male gender, lower family income, and travel distance to the closest specialized clinic for adults. Ethnicity, type of health insurance, urban vs rural residence, age at diagnosis, and education level were nonsignificantly related to care gaps, and age of the patient at the last pediatric visit was found to be either a risk or protective factor.

Disease Related Characteristics. Relevant characteristics include mild disease activity, severity, and complexity. In congenital heart failure, patients who had not undergone surgery had an increased risk of care gaps. Having at least 1 comorbid condition was found to be a protective factor.

Health Care Services Use. Significant risk factors included fewer outpatient pediatric care visits during the 3-year period before transfer, the patient’s final visit taking place outside of a university hospital setting, childhood hospitalizations, and a history of at least 1 missed appointment. One study analyzed found that a significant geographic difference in hospital location was related to whether care gaps occurred. Protective factors included providing the patient with a written referral to a specific clinician to provide adult care as well as good, early attendance to first and second adult clinic outpatient visits.

Patient Behavior. Significant protective factors included greater independence in attending appointments, a belief that follow-up should be continued via specialized adult care, high levels of self-efficacy, abstinence from substance use, and complete compliance with antibiotic prophylaxis regimens. Nonspecific determinants included health beliefs, self-rated activity restrictions, general preference to self-care, treatment adherence, and knowledge of the disease name.

“Over recent decades, survival rates have improved substantially for children diagnosed with a CCC,” wrote Dr Goossens. “Improving continuity of care for young people with CCCs requires tailored interventions or strategies to facilitate a smooth and continuous care process.”


  1. Goossens E, Bovijn L, Gewillig M, et al. Predictors of care gaps in adolescents with complex chronic condition transitioning to adulthood. Pediatrics. 2016; doi: 10.1542/peds.2015-2413