ArticleBMJ open2021
Patient and parent perspectives on transition from paediatric to adult healthcare in rheumatic diseases: an interview study.
Article in BMJ open, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 1 of them a synthesis that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
19 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Pooled it
- Article
- Methods for developing and validating outcome measures in paediatric rheumatology.Pediatric rheumatology online journal · 2026Review
- The unique challenges of childhood-onset systemic lupus erythematosus and lupus nephritis patients: a proposed framework for an individualized transitional care plan.Pediatric nephrology (Berlin, Germany) · 2025Review
- The Impact of Perceived Self-Efficacy on Healthcare Transition Outcomes: Perceptions From Parents and Young People.Child: care, health and development · 2025Article
- Caregiver experiences and needs in pediatric rheumatic disease: a mixed-methods systematic review protocol.Systematic reviews · 2025Article
- Transition clinics in pediatric rheumatology in Colombia: reflection on a necessary shortcomings.Advances in rheumatology (London, England) · 2025Review
- Patient and parent perspectives on an academic rheumatology transition clinic.Health care transitions · 2025Article
- Challenges in the transition of care for rare connective tissue diseases: results from the 2023 ERN ReCONNET Transition of Care Task Force survey.Rheumatology advances in practice · 2025Article
- Recommendations for Transitioning Young People with Primary Immunodeficiency Disorders and Autoinflammatory Diseases to Adult Care.Journal of clinical immunology · 2024Article
- The TRUST Study-TRansition US Together: Evaluating the Impact of a Parent- and Adolescent-Centered Transition Toolkit on Transition Readiness in Patients with Juvenile Idiopathic Arthritis and Childhood-Onset Systemic Lupus Erythematosus.Children (Basel, Switzerland) · 2024Article
- Towards a standardized program of transitional care for adolescents with juvenile idiopathic arthritis for Turkey: a national survey study.Pediatric rheumatology online journal · 2024Article
- Letting go/ moving on: A scoping review of relational effects on transition to adult care.Health care transitions · 2024Article
- Transition of patients with metabolic bone disease from paediatric to adult healthcare services: current situation and proposals for improvement.Orphanet journal of rare diseases · 2023Article
- A survey of Canadian adult rheumatologists' knowledge, comfort level, and barriers in assessing psychosocial needs of young adults with rheumatic diseases.Rheumatology international · 2023Article
- Pediatric patient engagement in clinical care, research and intervention development: a scoping review.Journal of patient-reported outcomes · 2023Article
- Navigating liminal spaces together: a qualitative metasynthesis of youth and parent experiences of healthcare transition.Journal of transition medicine · 2023Review
- Transitions from pediatric to adult rheumatology care for juvenile idiopathic arthritis: a patient led qualitative study.BMC rheumatology · 2022Article
- The Coming-of-Age Transition Care for Adolescents with Rheumatic Disease-Where Are We and What Have We Done in Asia?Journal of clinical medicine · 2021Review
Corrections and comments
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Authors and funding
14 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesTo describe the experiences, priorities, and needs of patients with rheumatic disease and their parents during transition from paediatric to adult healthcare.
settingFace-to-face and telephone semistructured interviews were conducted from December 2018 to September 2019 recruited from five hospital centres in Australia.
participantsFourteen young people and 16 parents were interviewed. Young people were included if they were English speaking, aged 14-25 years, diagnosed with an inflammatory rheumatic disease (eg, juvenile idiopathic arthritis, juvenile dermatomyositis, systemic lupus erythematosus, panniculitis, familial Mediterranean fever) before 18 years of age. Young people were not included if they were diagnosed in the adult setting.
resultsWe identified four themes with respective subthemes: avoid repeat of past disruption (maintain disease stability, preserve adjusted personal goals, protect social inclusion); encounter a daunting adult environment (serious and sombre mood, discredited and isolated identity, fear of a rigid system); establish therapeutic alliances with adult rheumatology providers (relinquish a trusting relationship, seek person-focused care, redefine personal-professional boundaries, reassurance of alternative medical supports, transferred trust to adult doctor) and negotiate patient autonomy (confidence in formerly gained independence, alleviate burden on patients, mediate parental anxiety).
conclusionsDuring transition, patients want to maintain disease stability, develop a relationship with their adult provider centralised on personal goals and access support networks. Strategies to comprehensively communicate information between providers, support self-management, and negotiate individualised goals for independence during transition planning may improve satisfaction, and health and treatment outcomes.
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