PB0640 - Experiences of young patients with hemophilia and their caregivers: A qualitative interview study

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
EK

Ekin Kerimoglu

Intern Industrial Design
Department of Human-Centered Design, Faculty of Industrial Design Engineering, Delft University of Technology, Delft, the Netherlands
Delft, Zuid-Holland, Netherlands
MM

Marijke Melles

Associate Professor
Department of Human-Centered Design, Faculty of Industrial Design Engineering, Delft University of Technology, Delft, the Netherlands
Delft, Zuid-Holland, Netherlands
MG

Mathieu Gielen

Assistant Professor
Department of Human-Centered Design, Faculty of Industrial Design Engineering, Delft University of Technology, Delft, the Netherlands
Delft, Zuid-Holland, Netherlands
AA

Armagan Albayrak

Assistant Professor
Department of Human-Centered Design, Faculty of Industrial Design Engineering, Delft University of Technology, Delft, the Netherlands
Delft, Zuid-Holland, 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
HL

Hester F. Lingsma

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

Background: To enable patient-centered care and facilitate the delivery of the best possible healthcare experiences, it is essential to gain insight into patient experiences with the disease involved and provided care.

Aims: This study aims to gain insight into how children (0–10 years) with hemophilia and their caregivers experience hemophilia care, and to identify opportunities for improvement.

Methods: Semi-structured interviews were held with young hemophilia patients and their caregivers at two hemophilia-treatment-centers (Erasmus MC and Amsterdam UMC) in the Netherlands. A mix of purposive and convenience sampling was used to select a varied sample. Patients and caregivers filled in a sensitizing booklet in preparation for the interview. An interview protocol was used as guidance, focusing on the influence of hemophilia on daily life and the provided care during the care trajectory. Interview transcripts were subjected to elaborate thematic content analysis including several phases of coding.

Results: Twenty-three interviews were held with severe (30%), moderate (9%) and mild (61%) hemophilia patients aged 14 months to 11 years and their caregivers. Multiple positive and negative experiences were identified (see figure 1). Despite the many comparable experiences, differences between severe and mild hemophilia patients became apparent. Areas for improvement include the (1) incomplete and not personalized information provision, (2) lack of hemophilia knowledge in healthcare providers working outside hemophilia-treatment-centers, (3) provided care at the emergency department, (4) perceived lack of control and (5) wish for home medication availability in moderate/mild hemophilia.

Conclusion(s): This study provides an in-depth overview of the experiences of children (0-10 years) with hemophilia and their caregivers, and identifies areas for improvement. Based on these findings hemophilia care can be improved for this patient population, and extrapolated to older hemophilia patients and other bleeding disorders. Optimizing the provided care may lead to improved patient centered care, better patient satisfaction and increased quality of life.