Transfer from paediatric rheumatology to the adult rheumatology setting: experiences and expectations of young adults with juvenile idiopathic arthritis

Abstract

Adolescents with juvenile idiopathic arthritis (JIA) are transferred from paediatrics to adult-oriented healthcare when they reach early adulthood. Research on the extent to which patients' expectations about the adult healthcare setting match their actual experience after transfer, may promote successful transfer from paediatrics to adult care. As part of the 'Don't Retard' project ( http://www.kuleuven.be/switch2/rheuma.html ), experiences and expectations of young adults regarding their transfer from paediatric rheumatology to adult rheumatology were explored. A qualitative study was conducted using semi-structured, in-depth interviews of 11 patients with JIA, aged 18 to 30. Data were analysed using procedures inherent to the content analysis approach. For both concepts, experiences and expectations, three main themes emerged: 'preparation', 'parental involvement' and an 'adapted setting for the late-adolescent or early adult'. The need for a gradual process covered the themes 'preparation' and 'parental involvement'. Young people with JIA prefer to have a say in the moment of transfer and in the reduction of parental involvement. The majority of the participants like their parents' presence at the first consultation at the adult rheumatology department. They expect a healthcare setting adapted to their needs and the possibility to meet peers in this setting. Sudden confrontation with older patients with severe rheumatoid arthritis at adult rheumatology was an unsettling experience for some of the young patients and they declared that better preparation is needed. This study enabled us to define three main themes important in transfer. These themes can facilitate healthcare professionals in developing specific interventions to prepare the young people to transfer, to regulate parental involvement and to arrange an adapted setting for them. Since we included patients who were in follow-up at one tertiary care centre, in which both paediatric and adult rheumatology care are located, the results of the study cannot be generalised to the entire population of patients with JIA.

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Rationale, design and baseline data of a mixed methods study examining the clinical impact of a brief transition programme for young people with juvenile idiopathic arthritis: the DON'T RETARD project

“…Hence, this particular qualitative study corresponds to the modelling phase of the MRC framework (figure 1, green box). The methods and results of this first qualitative study are reported in two related articles 21 22. Therefore, we do not elaborate on this study in the present article.…”

Healthcare transition in pediatric liver transplantation: The perspectives of pediatric and adult healthcare professionals

“…Common barriers to transition include lack of preparation, difficulties ending existing relationships with pediatric clinicians, and negative attitudes toward adult services. [6][7][8] Research into transition has moved away from transition policy and position papers toward exploring stakeholder views in order to gain more in-depth understanding of transition experiences and variables that contribute to success or failure. 9 The majority of these studies have been with young people and parents or caregivers, 6,10 and studies exploring HCP views have been relatively few and mainly in other specialties.…”

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“…Research into transition has moved away from transition policy and position papers toward exploring stakeholder views in order to gain more in‐depth understanding of transition experiences and variables that contribute to success or failure . The majority of these studies have been with young people and parents or caregivers, and studies exploring HCP views have been relatively few and mainly in other specialties . One recent quantitative survey involving 236 hepatologists identified that formalized transition programs are uncommon in adult hepatology clinics, with poor adherence and limited patient knowledge seen as barriers to optimal care .…”