High rates of unsuccessful transfer to adult care among young adults with juvenile idiopathic arthritis

Hazel, Elizabeth; Zhang, Xun; Duffy, Ciarán M.; Campillo, Sarah

doi:10.1186/1546-0096-8-2

Cited by 95 publications

(84 citation statements)

References 17 publications

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“…38 Two of these studies explicitly stated that patients diagnosed with a neurodevelopmental condition were excluded. 37,43 The majority of studies (80%) took place in the United States 25,36,37,41,43 or Canada, 35,38,42 whereas only 2 of the studies (20%) were conducted in Europe. 21,34 Sample sizes ranged from 18 to 922 young people (median: 227).…”

Section: Study Characteristicsmentioning

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: Study Characteristicsmentioning

confidence: 99%

“…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%

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

Goossens

Bovijn

Gewillig³

et al. 2016

Pediatrics

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“…37 The other 2 studies are cited in Table 1 only. 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.…”

Section: Tablementioning

confidence: 99%

“…38 The frequency of adult care visit did not differ significantly between structured and unstructured transitions in 2 studies. 20,22 Attendance at scheduled clinic appointments after transfer, reported in 5 studies (Table 5), was measured as the mean percentage of scheduled appointments attended per year in 2 studies, 6,26 as the proportion of patients attending appointments at 1 year 36 or 2 years, 37 or as the number of failed appointments. 27 One study on diabetes found a trend toward better attendance after structured than after unstructured transition.…”

Section: Retention In Adult Care After Transfermentioning

confidence: 99%

“…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 ). One study 39 included youths with special health care needs (n = 1865 participants) due to various diseases (ie, it was not specific to a particular disease).…”

Section: Study Designs Settings and Study Populationsmentioning

confidence: 99%

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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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US Adult Rheumatologists’ Perspectives on the Transition Process for Young Adults With Rheumatic Conditions

Zisman

Samad

Ardoin

et al. 2020

Arthritis Care & Research

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Objective To assess the attitudes and common practices of adult rheumatologists in the US regarding health care transition (HCT) for young adults with rheumatic diseases. Methods An anonymous online survey was sent to US adult rheumatologist members of the American College of Rheumatology to collect demographic data and information on attitudes and common practices regarding the transition process. Results Of 4,064 contacted rheumatologists, 203 (5%) completed the survey. Almost half of respondents (45.1%) were never trained in transition practices, and 74.7% were not familiar with the American Academy of Pediatrics/American Academy of Family Physicians/American College of Physicians Consensus Statement About Transitions for Youth with Special Healthcare Needs. Only 56.2% felt comfortable caring for former pediatric patients. The vast majority of respondents (90.7%) did not have a multidisciplinary transition team, and 37% did not have a plan for transitioning pediatric patients into their practice. Most adult rheumatologists were unsatisfied with the current transition process (92.9%), due to insufficient resources, personnel (91.1%), and time in clinic (86.9%). They also were unsatisfied with referral data received concerning previous treatments (48.9%), hospitalization history (48%), disease activity index (45.1%), medical history summary (43.9%), comorbidities (36.4%), medication list (34.1%), and disease classification (32.6%). Three major barriers to HCT were lack of insurance reimbursement (33.7%), knowledge about community resources (30.8%), and lapses in care between primary provider and specialist (27.8%). Conclusion This survey identified substantial gaps in knowledge and resources regarding HCT for young adults with rheumatic diseases. These may be best addressed by further training, research, dedicated resources, adequate payment, and practice guidelines.

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High rates of unsuccessful transfer to adult care among young adults with juvenile idiopathic arthritis

Cited by 95 publications

References 17 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

US Adult Rheumatologists’ Perspectives on the Transition Process for Young Adults With Rheumatic Conditions

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