PB0609 - Hemophilia care in the Netherlands: Identification and visualization of the care pathway for young children with hemophilia

Monday, June 24, 2024

13:45 – 14:45 ICT

Room: Exhibition Hall

Presenting Author(s)

Caroline Mussert, MD

PhD candidate
Department of hematology – pediatric hematology, Erasmus Medical Center Sophia Children's Hospital, University Medical Center Rotterdam, Rotterdam, the Netherlands
Rotterdam, Zuid-Holland, Netherlands

Co-Author(s)

Ev

Evelien S. van Hoorn

PhD Candidate
Department of Public Health, Erasmus Medical Center, University Medical Center Rotterdam, Rotterdam, the Netherlands
Woerden, Utrecht, Netherlands
Marlene Beijlevelt, MSc

Advanced Nurse Practitioner
Amsterdam UMC
Amsterdam, Noord-Holland, Netherlands
Cv

Carolien van der Velden - van 't Hoff

Nurse practitioner
Department of Pediatric Hematology and Oncology, Erasmus Medical Center Sophia Children’s Hospital, University Medical Center Rotterdam, Rotterdam, the Netherlands
Rotterdam, Zuid-Holland, Netherlands
SA

Sasja Andeweg

Nurse consultant
Department of Pediatric Hematology and Oncology, Erasmus Medical Center Sophia Children’s Hospital, University Medical Center Rotterdam, Rotterdam, the Netherlands
Rotterdam, Zuid-Holland, Netherlands
MJ

Margreet Jansen

Nurse consultant
Department of Hematology and Oncology, UMC Groningen Beatrix Children’s Hospital, University Medical Center Groningen, Groningen, The Netherlands
Groningen, Groningen, Netherlands
LH

Louise Hooimeijer

Pediatrician
Department of Hematology and Oncology, UMC Groningen Beatrix Children’s Hospital, University Medical Center Groningen, Groningen, The Netherlands
Groningen, Groningen, Netherlands
CL

Corinne Liem

Nurse practitioner
Department of Pediatric Hematology, Radboud University Medical Center, Nijmegen, The Netherlands
Nijmegen, Gelderland, Netherlands
Mt

Maroeska te Loo

Pediatric hematologist
Department of Pediatric Hematology, Radboud University Medical Center, Nijmegen, The Netherlands
Nijmegen, Gelderland, Netherlands
SR

Simone Reitsma-Houtman

Project manager
Department of hematology – pediatric hematology, Erasmus Medical Center Sophia Children's Hospital, University Medical Center Rotterdam, Rotterdam, the Netherlands
Rotterdam, Zuid-Holland, Netherlands
SG

Samantha C. Gouw, MD PhD

Pediatric hematologist
Department of Pediatric Hematology, Emma Children’s Hospital, Amsterdam UMC location University of Amsterdam, Amsterdam, the Netherlands
Amsterdam, Noord-Holland, Netherlands
MC

Marjon H. Cnossen

MD, PhD, professor
Department of Pediatric Hematology and Oncology, Erasmus MC Sophia Children’s Hospital, University Medical Center Rotterdam, Rotterdam, The Netherlands
Rotterdam, Zuid-Holland, Netherlands
HL

Hester F. Lingsma

Professor
Erasmus MC, University Medical Centre Rotterdam, Department of Public Health, Rotterdam, The Netherlands
Rotterdam, Zuid-Holland, Netherlands

Background: The evolving hemophilia landscape requires hemophilia-treatment-centers and their multidisciplinary teams to regularly adapt their care provision. Gaining insight into the current healthcare processes is essential to organize, standardize and overall improve hemophilia care.

Aims: This study aims to identify and visualize the care pathways for young children (0-8 years) with hemophilia in Dutch hemophilia-treatment-centers.

Methods: Metro Mapping methodology was used to co-design the care pathway for young children with hemophilia together with healthcare professionals at four hemophilia-treatment-centers in the Netherlands. The Metro Map consisted of four layers: the metro line, context, discussed information, and provided educational materials. The first version of the Metro Map was based on available documentation about the current care process and modified during multiple interactive co-creation sessions with at least one nurse practitioner/consultant and one pediatric hematologist from each center. Hereafter, a validation meeting took place with the entire pediatric team to finalize and validate the center-specific care pathway.

Results: The constructed Metro Maps of all four HTCs are mostly similar and describe seven phases of care including four chronological phases and three separate hemophilia specific pathways. Minimal differences were found in the type and frequency of consultations, involved healthcare professional, organization of the outpatient clinic, medication delivery, use of home care or shared care hospital to administer treatment, used type of ultrasound methodology to diagnose joint and muscle bleeds, and the degree of involvement of the pediatric team during bleeding episodes and medical interventions. Throughout the entire care pathway all centers discuss the same overarching topics, but the timing may differ.

Conclusion(s): This study comprehensively mapped the care pathways for young children with hemophilia at the majority of hemophilia-treatment-centers in the Netherlands. Implementation of these care pathways may guide patients and their caregivers more transparently through the healthcare process, stimulate continuous care improvement and support evaluation of healthcare innovations.