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Transition readiness among Dutch adolescents and young adults with haemophilia: a questionnaire study

1Emma Children’s Hospital, Amsterdam UMC location AMC, University of Amsterdam, Amsterdam, Noord-Holland, Netherlands, 2Department of Pediatric Hematology, Emma Children’s Hospital, Amsterdam UMC location AMC, University of Amsterdam, Amsterdam, the Netherlands, Amsterdam, Noord-Holland, Netherlands, 3Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, the Netherlands, Leiden, Zuid-Holland, Netherlands, 4Center for Benign Haematology, Thrombosis and Haemostasis, Van Creveldkliniek, University Medical Center Utrecht, University Utrecht, Utrecht, the Netherlands, Utrecht, Utrecht, Netherlands, 5Department of Internal Medicine, Division of Thrombosis and Hemostasis, Einthoven Laboratory for Vascular and Regenerative Medicine, Leiden University Medical Center, Leiden, The Netherlands., Leiden, Zuid-Holland, Netherlands, 6Department of Hematology, Maastricht University Medical Center, Maastricht University, Maastricht, the Netherlands, Maastricht, Limburg, Netherlands, 7Pediatric Hematology, Beatrix Children’s Hospital, University Medical Center Groningen, Groningen, Groningen, Netherlands, 8Amsterdam University Medical Centers, Amsterdam, the Netherlands, Amsterdam, Noord-Holland, Netherlands, 9Department of Hematology, Radboud university medical center, Nijmegen, the Netherlands; Hemophilia Treatment Center Nijmegen-Eindhoven-Maastricht, the Netherlands, Nijmegen, Gelderland, Netherlands, 10Department of Hematology, Erasmus MC, University Medical Center Rotterdam, The Netherlands, Rotterdam, Zuid-Holland, Netherlands, 11Netherlands Hemophilia Patient Society (NVHP), Nijkerk, the Netherlands, Nijkerk, Gelderland, Netherlands, 12Department of Clinical Epidemiology, Leiden University Medical Center, Leiden University, Leiden, the Netherlands, Leiden, Zuid-Holland, Netherlands, 13Department of Pediatric Hematology, Sophia Children’s Hospital, Erasmus University Medical Center, Erasmus University Rotterdam, Rotterdam, The Netherlands, Rotterdam, Zuid-Holland, Netherlands, 14Van Creveldkliniek, University Medical Center Utrecht, Utrecht University, Utrecht, the Netherlands, Utrecht, Utrecht, Netherlands, 15Department of Hematology, Radboud University Medical Center, Nijmegen, the Netherlands, Nijmegen, Gelderland, Netherlands, 16Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, the Netherlands; Center for Clinical Transfusion Research, Sanquin-Leiden University Medical Center, Leiden, the Netherlands, Leiden, Zuid-Holland, Netherlands, 17Department of Pediatric Hematology, Emma Children’s Hospital, Amsterdam University Medical Centers, location AMC, University of Amsterdam, Amsterdam, the Netherlands; Department of Molecular Hematology, Sanquin Research and Landsteiner Laboratory, Amsterdam, The Netherlands, Amsterdam, Noord-Holland, Netherlands, 18Department of Pediatric Hematology, Emma Children’s Hospital, Amsterdam University Medical Centers, location AMC, University of Amsterdam, Amsterdam, the Netherlands; Department of Clinical Epidemiology, Leiden University Medical Center, Leiden University, Leiden, the Netherlands, Amsterdam, Noord-Holland, Netherlands

Abstract Number: PB0652

Meeting: ISTH 2022 Congress

Theme: Hemophilia and Rare Bleeding Disorders » Hemophilia - Clinical

Background: Around the age of 18 years, care for patients with a chronic disease, including haemophilia, is transferred from paediatric to adult care. This phase is often associated with a decrease in treatment adherence. To improve adherence and transition readiness, transition programmes were developed. These help guide adolescents through transition in a structured, comprehensive way, focussing on increasing self-management. The first Dutch transition programme was implemented in haemophilia care.

Aims: To evaluate how adolescents and young adults with haemophilia in the Netherlands perceived their self-reported readiness to transfer to adult care, and to determine associated factors.

Methods: In 2019, people with haemophilia evaluated various aspects of their life using a nationwide questionnaire. Adolescents aged 12-17 years and young adults aged 18-25 years completed age-specific questionnaires on their transition readiness and preparation. Possible determinants of readiness were assessed using validated questionnaires, including quality of life (CHO-KLAT), self-efficacy (HSES) and treatment adherence (VERITAS-PRO).

Results: Data of 45 adolescents and 84 young adults with haemophilia (n=60, 46.5% with severe haemophilia; n=64, 49.6% using prophylaxis) were analysed. Of adolescents aged 12-14 years, 38.5% (10/26) reported to feel ready or almost ready to transition, which rose to 63.2% (12/19) for adolescents aged 15-17 years. Of young adults, only one participant (1.2%) reported he had not been ready to transition, and six (7.1%) did not know. Still, 13 young adults (15.5%) would have liked to receive more information on which professionals they would encounter in adult care, and 10 (11.9%) on healthcare costs. Prophylaxis use, joint bleeding rate and family history of haemophilia were not associated with readiness. Neither were quality of life, self-efficacy and treatment adherence, although positive trends were identified.

Conclusion(s): Self-reported transition readiness in adolescents and young adults with haemophilia is relatively high and increases with age. Nevertheless, several improvements were suggested to further personalize and improve transitioning.

To cite this abstract in AMA style:

Brands M, Janssen E, Smit C, van Vulpen L, Eikenboom J, Beckers E, Hooimeijer L, Coppens M, Schols S, Leebeek F, Driessens M, Rosendaal F, Cnossen M, Van der Valk P, Laros B, van der Bom J, Fijnvandraat K, Gouw S. Transition readiness among Dutch adolescents and young adults with haemophilia: a questionnaire study [abstract]. https://abstracts.isth.org/abstract/transition-readiness-among-dutch-adolescents-and-young-adults-with-haemophilia-a-questionnaire-study/. Accessed October 1, 2023.

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