A systematic review of transition readiness in youth with chronic disease
Open accessAbstract
The transition of chronically ill adolescents and young adults to adult health care is poorly managed, leading to poor outcomes due to insufficient disease knowledge and a lack of requisite skills to self-manage their chronic disease. This review analyzed 33 articles published between 2009 and 2019 to identify factors associated with transition readiness in adolescents and young adults with chronic diseases, which can be used to design effective interventions. Studies were predominantly cross-sectional survey designs that were guided by interdisciplinary research teams, assessed adolescents and young adults ages 12-26 years, and conducted in the outpatient setting. Modifiable factors, including psychosocial and self-management/transition education factors, and non-modifiable factors, including demographic/ecological and disease factors, associated with transition readiness were identified. Further research is necessary to address gaps identified in this review prior to intervention development, and there is a need for additional longitudinal studies designed to provide perspective on how transition readiness changes over time.
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There is a paucity of research examining a broad spectrum of health outcomes based on transition readiness scores and/or use of these tools in AYA with chronic conditions.
“There is a paucity of research examining a broad spectrum of health outcomes, including developmental and biopsychosocial outcomes (eg, adherence, self-efficacy, QoL) based on transition readiness scores and/or use of these tools in AYA with chronic conditions.537,542”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [537]
Research in TS and other conditions has shown conflicting readiness scores reported by patients versus caregivers.
“Additionally, perspectives of transition readiness may differ across informants—specifically, research in TS and other conditions has shown conflicting readiness scores reported by patients versus caregivers, and it is not clear how clinicians should address these discrepancies.537,546”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [537]
Longitudinal studies of transition readiness tools have not been conducted.
“Further, whereas these tools have been designed to assess progress towards transition readiness over time,451 longitudinal studies have not been conducted.537,542”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [537]
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Identifying the Distinct Profiles of Transition Readiness in Chinese Pediatric Cancer Survivors
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Transition readiness and coping styles in adolescents with type 1 diabetes
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Enabling good transition processes from child to adult medical care: a study protocol
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Transition experiences of young adults with perinatal HIV in the Netherlands
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Barriers to a successful healthcare transition for individuals with urea cycle disorders
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Kawasaki disease: patients’ transition journey and recommendations for adult care
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Focusing on Adult Health Care to Improve Transition for Youth with Chronic Disease
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Bibliometric analysis of transition readiness in adolescents with chronic diseases
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Piloting a Transition of Care Curriculum at Two Bi-coastal Medicine-Pediatrics Residency Programs
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Transición de los adolescentes con enfermedades crónicas: un reto en nuestra población
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Transition Readiness in Youth with Chronic Illnesses: Insights from Juvenile Idiopathic Arthritis
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Health Literacy Trends and Associations With Transition Readiness in Youth with Spinal Dysraphism
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- Authors
- Varty, M., & Popejoy, L. L.
- Affiliations
- University of Missouri (US)
- Corresponding author
- Varty, Maureen
- Venue
- Western Journal of Nursing Research
- Publisher
- SAGE Publications
- Published
- 2019-09-18
- Volume
- 42
- Issue
- 7
- Pages
- 554-566
- ISSN
- 0193-9459 (ISSN-L)
- 1552-8456
- PMC
- PMC7078024
- OpenAlex
- W2974086580
- Cited by
- 80
- References
- 71
- Citations by year
- 2026: 16 · 2025: 14 · 2024: 17 · 2023: 9 · 2022: 14 · 2021: 6 · 2020: 4
- FWCI
- 1.33
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Western Journal of Nursing Research (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institutes of Health (T32NR015426)
- Topics
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Health Sciences › Health Professions › General Health Professions › Child and Adolescent Health
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Pediatric Pain Management Techniques
- Keywords
- transition readiness, transition to adult care, chronic disease, adolescents, young adults, self-management, transition education, psychosocial factors, modifiable factors
- MeSH terms
- Transitional Care, Self-Management, Adolescent, Chronic Disease, Female, Humans, Health Knowledge, Attitudes, Practice, Male
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