Transfer of Adolescents With Congenital Heart Disease From Pediatric Cardiology to Adult Health Care

Goossens, Eva; Stephani, Ine; Hilderson, Deborah; Gewillig, Marc; Budts, Werner; Deyk, Kristien Van; Moons, Philip

doi:10.1016/j.jacc.2010.11.068

Cited by 101 publications

(102 citation statements)

References 22 publications

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“…The notion of a care gap includes concepts found in literature such as lapse(s) of care, 25 loss/lost to follow-up, 34,35 unsuccessful transfer or transition, [36][37][38] and cessation of follow-up. 21 …”

Section: Eligibility Criteriamentioning

confidence: 99%

“…15 Gaps in this transitional process occur in 7% to 21% of young people with acromegaly, [16][17][18] 9% to 17% of HIV-infected adolescents, 19 11% to 24% of patients with type I diabetes mellitus, 20 and 7% to 76% of young people with congenital heart disease. 21 This break in the delivery of health care (ie, care gaps) as adolescent patients leave pediatric care is associated with increased morbidity rates, longterm complications, number of hospitalizations, need for urgent interventions or reinterventions, and higher rates of health-risk behaviors. 17,[20][21][22][23][24][25][26][27][28][29][30] Therefore, developing measures to prevent such care gaps are of utmost importance.…”

mentioning

confidence: 99%

“…21 This break in the delivery of health care (ie, care gaps) as adolescent patients leave pediatric care is associated with increased morbidity rates, longterm complications, number of hospitalizations, need for urgent interventions or reinterventions, and higher rates of health-risk behaviors. 17,[20][21][22][23][24][25][26][27][28][29][30] Therefore, developing measures to prevent such care gaps are of utmost importance.…”

mentioning

confidence: 99%

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

Goossens

Bovijn

Gewillig³

et al. 2016

Pediatrics

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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.

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Section: Eligibility Criteriamentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

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

Goossens

Bovijn

Gewillig³

et al. 2016

Pediatrics

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“…All but 5 of the studies were carried out at single centers. The principal diseases studied were diabetes (11 studies 7, 18, 20-28 with 26 to 250 patients; 1148 overall), congenital heart disease (4 studies [29][30][31][32] with 153 to 794 patients; 1465 overall), and sickle cell disease (3 studies [33][34][35] with 18 to 83 patients; 148 overall). The other diseases studied were rheumatic diseases (131 patients in 2 studies 36,37 ), congenital adrenal hyperplasia (53 patients 6 ) and cystic fibrosis (68 patients 38 ).…”

Section: Study Designs Settings and Study Populationsmentioning

confidence: 99%

“…The first addressed current follow-up in adult care, without indicating the proportions of patients lost to follow-up before and after the first contact with the adult care unit. 32 The second used a composite outcome, including clinical attendance, access to a health insurance, self-perception of care, and delayed care. 39 …”

Section: Tablementioning

confidence: 99%

Evaluating Continuity During Transfer to Adult Care: A Systematic Review

et al. 2016

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CONTEXT: Appropriate outcomes are required to evaluate transition programs' ability to maintain care continuity during the transfer to adult care of youths with a chronic condition. OBJECTIVE:To identify the outcomes used to measure care continuity during transfer, and to analyze current evidence regarding the efficacy of transition programs.DATA SOURCES: PubMed (1948PubMed ( -2014, Web of Science (1945, Embase (1947Embase ( -2014, and the reference lists of the studies identified. STUDY SELECTION:Screening on titles and abstracts; full-text assessment by 2 reviewers independently.DATA EXTRACTION: By 2 reviewers independently, by using a Cochrane form adapted to observational studies, including bias assessment. RESULTS:Among the 23 studies retrieved, all but 5 were monocentric, 16 were cohorts (15 retrospective), 6 cross-sectional studies, and 1 randomized trial. The principal disease studied was diabetes (n = 11). We identified 24 indicators relating to 2 main aspects of continuity of care: engagement and retention in adult care. As designed, most studies probably overestimated engagement. A lack of adjustment for confounding factors was the main limitation of the few studies evaluating the efficacy of transition programs. LIMITATIONS:The assessment of bias was challenging, due to the heterogeneity and observational nature of the studies. CONCLUSIONS:This review highlights the paucity of knowledge about the efficacy of transition programs for ensuring care continuity during the transfer from pediatric to adult care. The outcomes identified are relevant and not specific to a disease. However, the prospective follow-up of patients initially recruited in pediatric care should be encouraged to limit an overestimation of care continuity.

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Transition from Pediatric‐ to Adult‐focused Healthcare in Young Adults with Chronic Medical Conditions

Maddux¹,

VanSlyke²,

Cortina³

2014

The Handbook of Behavioral Medicine

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Transfer of Adolescents With Congenital Heart Disease From Pediatric Cardiology to Adult Health Care

Cited by 101 publications

References 22 publications

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

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

Evaluating Continuity During Transfer to Adult Care: A Systematic Review

Transition from Pediatric‐ to Adult‐focused Healthcare in Young Adults with Chronic Medical Conditions

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