Background/Purpose: Despite the increasing number of transition programs available for rheumatology patients moving from paediatric to adult care, transition continues to pose challenges for patients and leads to poorer health outcomes. We aimed to describe patients’ attitudes and experiences of transitional care in paediatric rheumatology to capture a deeper understanding of patients’ perspectives and inform the development of patient-centred transitional care programs.

Methods: MEDLINE, Embase, PsycINFO, CINAHL, dissertation databases and reference lists were searched to February 2017 and thematic synthesis was used to analyse the findings.

Results: We included 18 studies involving 267 patients with paediatric rheumatic conditions (juvenile idiopathic arthritis [n=162], systemic lupus erythematosus [n=79], mixed connective tissue disease [n=5]). We identified six themes (with subthemes): a sense of belonging (familial care and community, yearning for friends with shared experiences, comfort and reassurance in age appropriate care, communication to gain understanding and acceptance); trust in familiarity (emotionally preparing for a new environment, building connection with continuity, valuing privacy, a supportive point of contact); abandonment and fear of the unknown (abrupt and forced independence, ill-equipped to transfer medical information, shocking view of future self); depersonalised and discredited (like an object on a conveyer belt, unmet needs and disjointed priorities, sterile and uninviting environment, sudden loss of validation); quest for autonomy (refreshingly liberated, ready to leave the nest, freedom to disclose); and needing control of parental involvement (unintentionally undermined, the guilt of independence, reluctant solitude).

Conclusion: There are limited qualitative studies on transitional care in paediatric rheumatology which focus largely on patients with juvenile idiopathic arthritis. Available qualitative studies show that successful transition can be nurtured by building trust in familiarity, creating a sense of belonging and facilitating an adolescent’s quest for autonomy. However, some patients feel de-personalised, abandoned, ill prepared and out of control of the transition process. The findings of this review highlight important elements to include into transitional care programs and the need for further research into patients’ needs in transitional care.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/patients-attitudes-and-experiences-of-transitional-care-in-paediatric-rheumatology-a-systematic-review-of-qualitative-studies/