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Lost in the transition from pediatric to adult healthcare? Experiences of young adults with severe asthma

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journal contribution
posted on 22.07.2019 by Maria Ödling, Marina Jonsson, Christer Janson, Erik Melén, Anna Bergström, Inger Kull

Objective: Asthma is a multifaceted disease, and severe asthma is likely to be persistent. Patients with severe asthma have the greatest burden and require more healthcare resources than those with mild-to-moderate asthma. The majority with asthma can be managed in primary care, while some patients with severe asthma warrant referral for expert advice regarding management. In adolescence, this involves a transition from pediatric to adult healthcare. This study aimed to explore how young adults with severe asthma experienced the transition process.

Methods: Young adults with severe asthma were recruited from an ongoing Swedish population-based cohort. Qualitative data were obtained through individual interviews (n = 16, mean age 23.4 years), and the transcribed data were analyzed with systematic text condensation.

Results: Four categories emerged based on the young adults’ experiences: “I have to take responsibility”, “A need of being involved”, “Feeling left out of the system”, and “Lack of engagement”. The young adults felt they had to take more responsibility, did not know where to turn, and experienced fewer follow-ups in adult healthcare. Further, they wanted healthcare providers to involve them in self-management during adolescence, and in general, they felt that their asthma received insufficient support from healthcare providers.

Conclusions: Based on how the young adults with severe asthma experienced the transition from pediatric to adult healthcare, it is suggested that healthcare providers together with each patient prepare, plan, and communicate in the transition process for continued care in line with transition guidelines.

Funding

This study was supported by the Swedish Heart-Lung Foundation, the Swedish Asthma and Allergy Association’s Research Foundation, the Swedish Research Council, and the program for doctoral education in healthcare science at Karolinska Institutet.

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