Transition readiness among adolescents and young adults with haemophilia in the Netherlands: Nationwide questionnaire study

Abstract 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 haemophili... Mehr ...

Verfasser: Brands, Martijn R.
Janssen, Ebony A. M.
Cnossen, Marjon H.
Smit, Cees
van Vulpen, Lize F. D.
van der Valk, Paul R.
Eikenboom, Jeroen
Heubel‐Moenen, Floor C. J. I.
Hooimeijer, Louise
Ypma, Paula
Nieuwenhuizen, Laurens
Coppens, Michiel
Schols, Saskia E. M.
Laros‐van Gorkom, Britta A. P.
Leebeek, Frank W. G.
Driessens, Mariëtte H. E.
Rosendaal, Frits R.
van der Bom, Johanna G.
Fijnvandraat, Karin
Gouw, Samantha C.
Dokumenttyp: Artikel
Erscheinungsdatum: 2023
Reihe/Periodikum: Haemophilia ; volume 29, issue 5, page 1191-1201 ; ISSN 1351-8216 1365-2516
Verlag/Hrsg.: Wiley
Sprache: Englisch
Permalink: https://search.fid-benelux.de/Record/base-29222058
Datenquelle: BASE; Originalkatalog
Powered By: BASE
Link(s) : http://dx.doi.org/10.1111/hae.14834

Abstract 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.