TY - JOUR
T1 - Transition readiness among adolescents and young adults with haemophilia in the Netherlands
T2 - Nationwide questionnaire study
AU - Brands, Martijn R.
AU - Janssen, Ebony A. M.
AU - Cnossen, Marjon H.
AU - Smit, Cees
AU - van Vulpen, Lize F. D.
AU - van der Valk, Paul R.
AU - Eikenboom, Jeroen
AU - Heubel-Moenen, Floor C. J. I.
AU - Hooimeijer, Louise
AU - Ypma, Paula
AU - Nieuwenhuizen, Laurens
AU - Coppens, Michiel
AU - Schols, Saskia E. M.
AU - Laros-van Gorkom, Britta A. P.
AU - Leebeek, Frank W. G.
AU - Driessens, Mariëtte H. E.
AU - Rosendaal, Frits R.
AU - van der Bom, Johanna G.
AU - Fijnvandraat, Karin
AU - Gouw, Samantha C.
N1 - Funding Information: We thank all participants for their participation. The HiN6 Steering Group includes: L.F.D. van Vulpen, J. Eikenboom, E.A.M. Beckers, L. Hooimeijer, P.F. Ypma, L. Nieuwenhuizen, M. Coppens, S.E.M. Schols, B.A.P. Laros, P.R. van der Valk, M.H. Cnossen, M.H.E. Driessens, J.G. van der Bom, F.R. Rosendaal, C. Smit, F.W.G. Leebeek and S.C Gouw. S. Hassan and E.C. van Balen helped develop the HiN6 protocol and collected and analysed the data. J.G. van der Bom, C. Smit, F.R. Rosendaal and S.C. Gouw initiated and coordinated the HiN6 project and supervised data collection. The HIN6 study was funded by the Dutch Ministry of Health, Welfare and Sports as part of the Hemophilia in the Netherlands study and by the Dutch Hemophilia Foundation (Stichting Haemophilia). Publisher Copyright: © 2023 The Authors. Haemophilia published by John Wiley & Sons Ltd.
PY - 2023/9
Y1 - 2023/9
N2 - Introduction: Care for adolescents with haemophilia is transferred from paediatric to adult care around the age of 18 years. Transition programs help to prepare adolescents for this transfer and prevent declining treatment adherence. Evaluating transition readiness may identify areas for improvement. Objective: Assess transition readiness among Dutch adolescents and young adults with haemophilia, determine factors associated with transition readiness, and identify areas of improvement in transition programs. Methods: All Dutch adolescents and young adults aged 12–25 years with haemophilia were invited to participate in a nationwide questionnaire study. Transition readiness was assessed using multiple-choice questions and was defined as being ready or almost ready for transition. Potential factors associated with transition readiness were investigated, including: socio-demographic and disease-related factors, treatment adherence, health-related quality of life, and self-efficacy. Results: Data of 45 adolescents and 84 young adults with haemophilia (47% with severe haemophilia) were analyzed. Transition readiness increased with age, from 39% in 12–14 year-olds to 63% in 15–17 year-olds. Nearly all post-transition young adults (92%, 77/84) reported they were ready for transition. Transition readiness was associated with treatment adherence, as median VERITAS-Pro treatment adherence scores were worse in patients who were not ready (17, IQR 9–29), compared to those ready for transition (11, IQR 9–16). Potential improvements were identified: getting better acquainted with the adult treatment team prior to transition and information on managing healthcare costs. Conclusions: Nearly all post-transition young adults reported they were ready for transition. Improvements were identified regarding team acquaintance and preparation for managing healthcare costs.
AB - Introduction: Care for adolescents with haemophilia is transferred from paediatric to adult care around the age of 18 years. Transition programs help to prepare adolescents for this transfer and prevent declining treatment adherence. Evaluating transition readiness may identify areas for improvement. Objective: Assess transition readiness among Dutch adolescents and young adults with haemophilia, determine factors associated with transition readiness, and identify areas of improvement in transition programs. Methods: All Dutch adolescents and young adults aged 12–25 years with haemophilia were invited to participate in a nationwide questionnaire study. Transition readiness was assessed using multiple-choice questions and was defined as being ready or almost ready for transition. Potential factors associated with transition readiness were investigated, including: socio-demographic and disease-related factors, treatment adherence, health-related quality of life, and self-efficacy. Results: Data of 45 adolescents and 84 young adults with haemophilia (47% with severe haemophilia) were analyzed. Transition readiness increased with age, from 39% in 12–14 year-olds to 63% in 15–17 year-olds. Nearly all post-transition young adults (92%, 77/84) reported they were ready for transition. Transition readiness was associated with treatment adherence, as median VERITAS-Pro treatment adherence scores were worse in patients who were not ready (17, IQR 9–29), compared to those ready for transition (11, IQR 9–16). Potential improvements were identified: getting better acquainted with the adult treatment team prior to transition and information on managing healthcare costs. Conclusions: Nearly all post-transition young adults reported they were ready for transition. Improvements were identified regarding team acquaintance and preparation for managing healthcare costs.
KW - Adolescent
KW - Haemophilia A
KW - Haemophilia B
KW - Self-Management
KW - Transition to Adult Care
KW - Treatment Adherence and Compliance
KW - Young Adult
UR - http://www.scopus.com/inward/record.url?scp=85168523537&partnerID=8YFLogxK
U2 - https://doi.org/10.1111/hae.14834
DO - https://doi.org/10.1111/hae.14834
M3 - Article
C2 - 37602825
SN - 1351-8216
VL - 29
SP - 1191
EP - 1201
JO - Haemophilia
JF - Haemophilia
IS - 5
ER -