Patients’ and health care providers’ perspectives on quality of hemophilia care in the Netherlands: a questionnaire and interview study

• Published in: Research and practice in thrombosis and haemostasis 2023-05, Vol.7 (4), p.100159-100159, Article 100159
• Main Authors: Brands, Martijn R., Haverman, Lotte, Muis, Jelmer J., Driessens, Mariëtte H.E., van der Meer, Felix J.M., Goedhart, Geertje, Meijer, Stephan, de Jong, Marianne, van der Bom, Johanna G., Cnossen, Marjon H., Fijnvandraat, Karin, Gouw, Samantha C., van Vulpen, L.F.D., Eikenboom, J., Beckers, E.A.M., Hooimeijer, L., Ypma, P.F., Nieuwenhuizen, L., Coppens, M., Schols, S.E.M., Laros, B.A.P., Valk, P.R., Cnossen, M.H., Driessens, M.H.E., van der Bom, J.G., Rosendaal, F.R., Smit, C., Leebeek, F.W.G., Gouw, S.C., Hassan, S., van Balen, E.C., Reitsma, S.H.
• Format: Article
• Language: English
• Subjects: health policy; hemophilia A; hemophilia B; Original; patient satisfaction; quality of health care; telemedicine
• ISSN: 2475-0379; 2475-0379
• DOI: 10.1016/j.rpth.2023.100159

Hemophilia care has improved greatly because of advances in treatment options and comprehensive care. In-depth insight into the perspectives of persons with hemophilia and health care providers on their care may provide targets for further improvements. To assess satisfaction of the hemophilia population with their care, to explore factors determining care satisfaction, and to identify areas for potential health care improvements, including digital health tools. First, to assess care satisfaction and factors determining satisfaction and health care improvements, data from a nationwide, cross-sectional questionnaire among 867 adult and pediatric Dutch persons with hemophilia A or B were analyzed. This included the Hemophilia Patient Satisfaction Scale questionnaire, Canadian Hemophilia Outcomes Kids’ Life Assessment Tool satisfaction questions, a visual analog scale satisfaction score, and open questions. Second, to further explore factors determining satisfaction and health care improvements, semistructured interviews were conducted with 19 persons with hemophilia or their parents and 18 health care providers. High care satisfaction was found, with an overall median Hemophilia Patient Satisfaction Scale score of 12 (IQR, 6-21). Participants in the interviews reported that patient-professional interactions, availability of care, and coordination of care were major factors determining satisfaction. Suggested health care improvements included improved information provision and coordination of care, especially shared care with professionals not working within comprehensive care centers. Participants suggested that digital health tools could aid in this. Satisfaction with hemophilia care is high among persons with hemophilia in the Netherlands, although several potential improvements have been identified. Accentuating these is especially relevant in the current era of treatment innovations, in which we might focus less on other aspects of care. •The perceived quality of care by people with hemophilia is determined by different elements.•We assessed care satisfaction by conducting a nationwide questionnaire and in-depth interviews.•Satisfaction was mainly determined by care availability, communication, and coordination of care.•Desired improvements related to information provision, coordination responsibilities, and e-Health.