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

TY - JOUR

T1 - Initiating transitional care for adolescents with cystic fibrosis at the age of 12 is both feasible and promising

AU - Skov, M.

AU - Teilmann, G.

AU - Damgaard, I.N.

AU - Nielsen, Kim G.

AU - Hertz, P G

AU - Holgersen, M G

AU - Presfeldt, M

AU - Dalager, A M S

AU - Brask, M.

AU - Boisen, K A

N1 - ©2018 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.

PY - 2018/11

Y1 - 2018/11

N2 - 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.

AB - 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.

U2 - 10.1111/apa.14388

DO - 10.1111/apa.14388

M3 - Journal article

C2 - 29729195

SN - 0803-5253

VL - 107

SP - 1977

EP - 1982

JO - Acta Paediatrica, International Journal of Paediatrics, Supplement

JF - Acta Paediatrica, International Journal of Paediatrics, Supplement

IS - 11

ER -