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

Martijn R. Brands; Ebony A.M. Janssen; Marjon H. Cnossen; Cees Smit; Lize F.D. van Vulpen; Paul R. van der Valk; Jeroen Eikenboom; Floor C.J.I. Heubel-Moenen; Louise Hooimeijer; Paula Ypma; Laurens Nieuwenhuizen; Michiel Coppens; Saskia E.M. Schols; Britta A.P. Laros-van Gorkom; Frank W.G. Leebeek; Mariëtte H.E. Driessens; Frits R. Rosendaal; Johanna G. van der Bom; Karin Fijnvandraat; Samantha C. Gouw

doi:10.1111/hae.14834

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

Martijn R. Brands, Ebony A.M. Janssen, Marjon H. Cnossen, Cees Smit, Lize F.D. van Vulpen, Paul R. van der Valk, Jeroen Eikenboom, Floor C.J.I. Heubel-Moenen, Louise Hooimeijer, Paula Ypma, Laurens Nieuwenhuizen, Michiel Coppens, Saskia E.M. Schols, Britta A.P. Laros-van Gorkom, Frank W.G. Leebeek, Mariëtte H.E. Driessens, Frits R. Rosendaal, Johanna G. van der Bom, Karin Fijnvandraat, Samantha C. Gouw^*

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

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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.

Original language	English
Pages (from-to)	1191-1201
Number of pages	11
Journal	Haemophilia
Volume	29
Issue number	5
Early online date	21 Aug 2023
DOIs	https://doi.org/10.1111/hae.14834
Publication status	Published - Sept 2023

Bibliographical note

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).

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© 2023 The Authors. Haemophilia published by John Wiley & Sons Ltd.

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Brands, M. R., Janssen, E. A. M., Cnossen, M. H., Smit, C., van Vulpen, L. F. D., van der Valk, P. R., Eikenboom, J., Heubel-Moenen, F. C. J. I., Hooimeijer, L., Ypma, P., Nieuwenhuizen, L., Coppens, M., Schols, S. E. M., Laros-van Gorkom, B. A. P., Leebeek, F. W. G., Driessens, M. H. E., Rosendaal, F. R., van der Bom, J. G., Fijnvandraat, K., & Gouw, S. C. (2023). Transition readiness among adolescents and young adults with haemophilia in the Netherlands: Nationwide questionnaire study. Haemophilia, 29(5), 1191-1201. https://doi.org/10.1111/hae.14834

@article{de6dbe2915ba45808d74a9e4b90fa0ae,

title = "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 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.",

author = "Brands, {Martijn R.} and Janssen, {Ebony A.M.} and Cnossen, {Marjon H.} and Cees Smit and {van Vulpen}, {Lize F.D.} and {van der Valk}, {Paul R.} and Jeroen Eikenboom and Heubel-Moenen, {Floor C.J.I.} and Louise Hooimeijer and Paula Ypma and Laurens Nieuwenhuizen and Michiel Coppens and Schols, {Saskia E.M.} and {Laros-van Gorkom}, {Britta A.P.} and Leebeek, {Frank W.G.} and Driessens, {Mari{\"e}tte H.E.} and Rosendaal, {Frits R.} and {van der Bom}, {Johanna G.} and Karin Fijnvandraat and Gouw, {Samantha C.}",

note = "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: {\textcopyright} 2023 The Authors. Haemophilia published by John Wiley & Sons Ltd.",

year = "2023",

month = sep,

doi = "10.1111/hae.14834",

language = "English",

volume = "29",

pages = "1191--1201",

journal = "Haemophilia",

issn = "1351-8216",

publisher = "Wiley-Blackwell Publishing Ltd",

number = "5",

}

Brands, MR, Janssen, EAM, Cnossen, MH, Smit, C, van Vulpen, LFD, van der Valk, PR, Eikenboom, J, Heubel-Moenen, FCJI, Hooimeijer, L, Ypma, P, Nieuwenhuizen, L, Coppens, M, Schols, SEM, Laros-van Gorkom, BAP, Leebeek, FWG, Driessens, MHE, Rosendaal, FR, van der Bom, JG, Fijnvandraat, K & Gouw, SC 2023, 'Transition readiness among adolescents and young adults with haemophilia in the Netherlands: Nationwide questionnaire study', Haemophilia, vol. 29, no. 5, pp. 1191-1201. https://doi.org/10.1111/hae.14834

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.

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U2 - 10.1111/hae.14834

DO - 10.1111/hae.14834

M3 - Article

C2 - 37602825

AN - SCOPUS:85168523537

SN - 1351-8216

VL - 29

SP - 1191

EP - 1201

JO - Haemophilia

JF - Haemophilia

IS - 5

ER -

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

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