Predictors of Care Gaps in Adolescents With Complex Chronic Condition Transitioning to Adulthood

Abstract

CONTEXT: Breaks in the delivery of health care (ie, [health]care gaps) occur in a large proportion of young people transitioning to adulthood. Developing interventions that prevent adolescents from dropping out of the medical system, as they leave pediatric care, requires an understanding of determinants of care gaps. OBJECTIVE:To ascertain determinants of care gaps in young people with chronic conditions as they transition to adulthood by performing a systematic literature search.DATA SOURCES: MEDLINE, CINAHL, and Embase were queried for pertinent peer-reviewed publications.STUDY SELECTION: Primary quantitative or mixed methods studies that aimed to identify determinants of care gaps in young people (aged 10-25 years) diagnosed with complex chronic conditions and written in English, French, or Dutch were selected. Ten publications satisfied these criteria. DATA EXTRACTION:For each publication, determinants of care gaps and quantitative results were extracted. Determinants were categorized into 4 groups using thematic analysis. Quantitative results were standardized, and raw data were converted into odds ratios. RESULTS:Overall, 11 risk factors and 9 protective factors for care gaps were identified. All factors were related to patient characteristics. Demographics, disease-related characteristics, health care services use, and patient health behaviors and beliefs were significant determinants of care gaps in adolescents with chronic conditions. LIMITATIONS: Large variability in study methods, statistical techniques, and study populations resulted in inconsistent study findings. CONCLUSIONS:This systematic review identified patient-related determinants of care gaps. Unfortunately, the internal and external validity of the study findings are limited, warranting future prospective, multilevel studies that address remaining knowledge gaps.

Correlates of successful transition in young adults with sickle cell disease

“…This suggests that, in our cohort, disease severity leading to hospitalization may negatively influence transition outcomes. In contrast, other studies in SCD and other chronic diseases found milder disease and decreased health care utilization correlated with increased care gaps . Thus, while co‐morbidities and disease severity are related to adverse health outcomes during transition, disease‐related characteristics and use of health care services are variably linked to transition outcomes.…”

Parental uncertainty about transferring their adolescent with congenital heart disease to adult care

“…| 381 typical example of a chronic childhood condition. It is the most common congenital malformation with a birth prevalence of up to 9.3 cases/1,000 newborns (van der Linde et al, 2011) and in many cases it requires lifelong medical follow-up (Goossens, Bovijn, Gewillig, Budts, & Moons, 2016).…”

Transition of pediatric patients with an Auto-inflammatory Disease: an alternative version of the Daedaulus and Icarus myth

“…Empowering the patient/family though interactive conversation, and simulation-based training will effectively support the young patient in problem-solving; merely providing answers to prepared questions or suggesting ready solutions through the physician disease glance will not support increased retention of knowledge and skills. 3,4,15,25,29,33 Barriers to good compliance can be attributed to the lack or misunderstanding of the AID nature and disease prioritizations, any adverse events, the AID impact in socializing or relationships, as well as parenteral administration of biologics. Poor compliance to these agents may not just be fear of needles, but reluctance of difficulties with self-administration, that my lead to social isolation.…”

“…25,26,32 Icarus' wings Icarus' contemporary flight wings are the growing skills for communication, decision making, and self-health management, aiming towards a healthy life-style and realization of the life-long co-existence with the AID. 25,32,33 Compliance to medication -even if parenterally administered -is of high importance to "pilot" the safe flight. 34 When is the ideal onset time for the "flight preparation"?…”