PB0652 - Transition readiness among Dutch adolescents and young adults with haemophilia: a questionnaire study

Monday, July 11, 2022

6:30 PM – 7:30 PM

Location: Exhibition

Presentation Format: In-Person

Presenting Author(s)

Martijn Brands, MD

PhD candidate
Emma Children’s Hospital, Amsterdam UMC location AMC, University of Amsterdam
Amsterdam, Noord-Holland, Netherlands

Co-Author(s)

EJ

Ebony Janssen

Student
Department of Pediatric Hematology, Emma Children’s Hospital, Amsterdam UMC location AMC, University of Amsterdam, Amsterdam, the Netherlands
Amsterdam, Noord-Holland, Netherlands
CS

Cees Smit

Patient advocate
Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, the Netherlands
Leiden, Zuid-Holland, Netherlands
Lv

Lize F.D. van Vulpen

Internist Hematologist
Center for Benign Haematology, Thrombosis and Haemostasis, Van Creveldkliniek, University Medical Center Utrecht, Utrecht University, The Netherlands
Utrecht, Utrecht, Netherlands
JE

Jeroen C.J. Eikenboom

Professor, Internist, Head of Div. T&H
Department 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
EB

Erik A.M. Beckers

Head of Haematology
Department of Hematology, Maastricht University Medical Center + and Maastricht University, Maastricht, The Netherlands
Maastricht, Limburg, Netherlands
LH

Louise Hooijmeijer

Hematologist
Division of Hematology/Oncology, Department of Pediatrics, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands
Groningen, Groningen, Netherlands
Michiel Coppens, MD, PhD

Medical Specialist
Department of Vascular Medicine, Amsterdam UMC location University of Amsterdam, Amsterdam, The Netherlands
Amsterdam, Noord-Holland, Netherlands
SS

Saskia E.M. Schols

Internist-hematologist
Department of Hematology, Radboud university medical center, Nijmegen, The Netherlands. Hemophilia Treatment Center Nijmegen – Eindhoven – Maastricht, The Netherlands
Nijmegen, Gelderland, Netherlands
Frank W.G. Leebeek, MD, PhD

Professor and Head of Department of Hematology
Erasmus MC, University Medical Center Rotterdam, The Netherlands
Rotterdam, Zuid-Holland, Netherlands
MD

Mariëtte Driessens

Patient advocate
Netherlands Hemophilia Patient Society (NVHP), Nijkerk, the Netherlands
Nijkerk, Gelderland, Netherlands
FR

Frits R. R. Rosendaal

Professor
Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands
Leiden, Zuid-Holland, Netherlands
MC

Marjon H. Cnossen

Associate professor, pediatric hematologist, MD, PhD
Department of Pediatric Hematology, Erasmus MC – Sophia Children’s Hospital, University Medical Center Rotterdam, Rotterdam, The Netherlands
Rotterdam, Zuid-Holland, Netherlands
Pv

Paul R. van der Valk

Internist Hematologist
Center for Benign Haematology, Thrombosis and Haemostasis, Van Creveldkliniek, University Medical Center Utrecht, Utrecht University, The Netherlands
Utrecht, Utrecht, Netherlands
BL

Britta Laros

Hematologist
Department of Hematology, Radboud University Medical Center, Nijmegen, the Netherlands
Nijmegen, Gelderland, Netherlands
JB

Johanna G. Bom, van der

professor of Clinical Epidemiology
Department Clinical Epidemiology, Leiden University Medical Center, Leiden, the Netherlands
Leiden, Zuid-Holland, Netherlands
KF

Karin Fijnvandraat

Professor of Pediatric Hematology
Department of Pediatric Hematology, Amsterdam UMC, University of Amsterdam, Amsterdam, the Netherlands
Amsterdam, Noord-Holland, Netherlands
SG

Samantha C. Gouw, MD, PhD

Pediatric Hematologist
Amsterdam UMC, University of Amsterdam, Emma Children’s Hospital, Pediatric Hematology, Meibergdreef 9, Amsterdam, Netherlands; Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands.
Amsterdam, Noord-Holland, Netherlands

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.