Dataset Information

Patient and parent perspectives on transition from paediatric to adult healthcare in rheumatic diseases: an interview study.

ABSTRACT:

Objectives

To describe the experiences, priorities, and needs of patients with rheumatic disease and their parents during transition from paediatric to adult healthcare.

Setting

Face-to-face and telephone semistructured interviews were conducted from December 2018 to September 2019 recruited from five hospital centres in Australia.

Participants

Fourteen 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.

Results

We 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).

Conclusions

During 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.

SUBMITTER: Jiang I

PROVIDER: S-EPMC7783517 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature

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Publications

Patient and parent perspectives on transition from paediatric to adult healthcare in rheumatic diseases: an interview study.

Jiang Ivy I Major Gabor G Singh-Grewal Davinder D Teng Claris C Kelly Ayano A Niddrie Fiona F Chaitow Jeffrey J O'Neill Sean S Hassett Geraldine G Damodaran Arvin A Bernays Sarah S Manera Karine K Tong Allison A Tunnicliffe David J DJ

BMJ open 20210104 1

<h4>Objectives</h4>To describe the experiences, priorities, and needs of patients with rheumatic disease and their parents during transition from paediatric to adult healthcare.<h4>Setting</h4>Face-to-face and telephone semistructured interviews were conducted from December 2018 to September 2019 recruited from five hospital centres in Australia.<h4>Participants</h4>Fourteen young people and 16 parents were interviewed. Young people were included if they were English speaking, aged 14-25 years, ...[more]

PMID: 33397662

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Project description:BackgroundAgeing into adulthood is challenging at baseline, and doing so with a chronic disease can add increased stress and vulnerability. Worldwide, a substantial care gap exists as children transition from care in a paediatric to adult setting. There is no current consensus on safe and equitable healthcare transition (HCT) for patients with chronic disease in resource-denied settings. Much of the existing literature is specific to HIV care. The objective of this narrative review was to summarise current literature related to adolescent HCT not associated with HIV, in low-income and middle-income countries (LMICs) and other resource-denied settings, in order to inform equitable health policy strategies.MethodsA literature search was performed using defined search terms in PubMed and Cumulative Index to Nursing and Allied Health Literature databases to identify all peer-reviewed studies published until January 2020, pertaining to paediatric to adult HCT for adolescents and young adults with chronic disease in resource-denied settings. Following deduplication, 1111 studies were screened and reviewed by two independent reviewers, of which 10 studies met the inclusion criteria. Resulting studies were included in thematic analysis and narrative synthesis.ResultsTwelve subthemes emerged, leading to recommendations which support equitable and age-appropriate adolescent care. Recommendations include (1) improvement of community health education and resilience tools for puberty, reproductive health and mental health comorbidities; (2) strengthening of health systems to create individualised adolescent-responsive policy; (3) incorporation of social and financial resources in the healthcare setting; and (4) formalisation of institution-wide procedures to address community-identified barriers to successful transition.ConclusionLimitations of existing evidence relate to the paucity of formal policy for paediatric to adult transition in LMICs for patients with childhood-onset conditions, in the absence of a diagnosis of HIV. With a rise in successful treatments for paediatric-onset chronic disease, adolescent health and transition programmes are needed to guide effective health policy and risk reduction for adolescents in resource-denied settings.

Project description:IntroductionHealthcare transitions, including from paediatric to adult services, can be disruptive and cause a lack of continuity in care. Existing research on the paediatric-adult healthcare transition often uses a simple age cut-off to assign transition status. This risks misclassification bias, reducing observed changes at transition (adults are included in the paediatric group and vice versa) possibly to differing extents between groups that transition at different ages.ObjectiveTo develop and assess methods for estimating the transition point from paediatric to adult healthcare from routine healthcare records.MethodsA retrospective cohort of young people (12 to 23 years) with long term conditions was constructed from linked primary and secondary care data in England. Inpatient and outpatient records were classified as paediatric or adult based on treatment and clinician specialities. Transition point was estimated using three methods based on record classification (First Adult: the date of first adult record; Last Paediatric: date of last paediatric record; Fitted: a date determined by statistical fitting). Estimated transition age was compared between methods. A simulation explored impacts of estimation approaches compared to a simple age cut-off when assessing associations between transition status and healthcare events.ResultsSimulations showed using an age-based cut-off at 16 or 18 years as transition point, common in research on transition, may underestimate transition-associated changes. Many health records for those aged <14 years were classified as adult, limiting utility of the First Adult approach. The Last Paediatric approach is least sensitive to this possible misclassification and may best reflect experience of the transition.ConclusionsEstimating transition point from routine healthcare data is possible and offers advantages over a simple age cut-off. These methods, adapted as necessary for data from other countries, should be used to reduce risk of misclassification bias in studies of transition in nationally representative data.

Dataset Information

Patient and parent perspectives on transition from paediatric to adult healthcare in rheumatic diseases: an interview study.

Objectives

Setting

Participants

Results

Conclusions

Publications

Patient and parent perspectives on transition from paediatric to adult healthcare in rheumatic diseases: an interview study.

Similar Datasets

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