Initiating transitional care for adolescents with cystic fibrosis at the age of 12 is both feasible and promising

• Published in: Acta Paediatrica 2018-11, Vol.107 (11), p.1977-1982
• Main Authors: Skov, M, Teilmann, G, Damgaard, I N, Nielsen, K G, Hertz, P G, Holgersen, M G, Presfeldt, M, Dalager, A M S, Brask, M, Boisen, K A
• Format: Article
• Language: English
• Subjects: Adolescence; Adolescents; Body mass; Body mass index; Child development; Chronic disease; Cystic fibrosis; Health‐related quality of life; Lungs; Quality of life; Respiratory function; Teenagers; Transitional care
• ISSN: 0803-5253; 1651-2227
• DOI: 10.1111/apa.14388

Aim Adolescence is a vulnerable period in cystic fibrosis, associated with declining lung function. This study described, implemented and evaluated a transition programme for adolescents. Methods We conducted a single centre, nonrandomised and noncontrolled prospective programme at the cystic fibrosis centre at Copenhagen University Hospital Rigshospitalet from 2010 to 2011, assessing patients aged 12–18 at baseline and after 12 months. Changes implemented included staff training on communication, a more youth‐friendly feel to the outpatient clinic, the introduction of youth consultations partly alone with the adolescent, and a parents’ evening focusing on cystic fibrosis in adolescence. Lung function and body mass index (BMI) were measured monthly and adolescents were assessed for their readiness for transition and quality of life at baseline and 12 months. Results We found that 40 (98%) of the eligible patients participated and youth consultations were successfully implemented with no dropouts. The readiness checklist score increased significantly over the one‐year study period, indicating increased readiness for transfer and self‐care. Overall quality of life, lung function and BMI remained stable during the study period. Conclusion A well‐structured transition programme for cystic fibrosis patients as young as 12 years of age proved to be both feasible and sustainable.