TY - JOUR
T1 - Patients’ and health care providers’ perspectives on quality of hemophilia care in the Netherlands
T2 - a questionnaire and interview study
AU - Brands, Martijn R.
AU - Haverman, Lotte
AU - Muis, Jelmer J.
AU - Driessens, Mariëtte H. E.
AU - van der Meer, Felix J. M.
AU - Goedhart, Geertje
AU - Meijer, Stephan
AU - de Jong, Marianne
AU - van der Bom, Johanna G.
AU - Cnossen, Marjon H.
AU - Fijnvandraat, Karin
AU - Gouw, Samantha C.
AU - HiN6 Steering Group
AU - van Vulpen, L. F. D.
AU - Eikenboom, J.
AU - Beckers, E. A. M.
AU - Hooimeijer, L.
AU - Ypma, P. F.
AU - Nieuwenhuizen, L.
AU - Coppens, M.
AU - Schols, S. E. M.
AU - Laros, B. A. P.
AU - Valk, P. R.
AU - SYMPHONY consortium
AU - Cnossen, M. H.
AU - Driessens, M. H. E.
AU - van der Bom, J. G.
AU - Rosendaal, F. R.
AU - Smit, C.
AU - Leebeek, F. W. G.
AU - Gouw, S. C.
AU - Hassan, S.
AU - van Balen, E. C.
AU - Reitsma, S. H.
N1 - Funding Information: The HIN6 study was funded by the Dutch Ministry of Health, Welfare and Sports as part of the Hemophilia in the Netherlands study and by the Dutch Hemophilia Foundation (Stichting Haemophilia). In addition, this study was performed on behalf of SYMPHONY consortium, which is funded by a grant from the Netherlands Organization for Scientific Research (NWO) in the framework of the NWA-ORC Call grant agreement (NWA.1160.18.038). Publisher Copyright: © 2023 The Author(s)
PY - 2023/5/1
Y1 - 2023/5/1
N2 - Background: 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. Objectives: 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. Methods: 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. Results: 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. Conclusion: 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.
AB - Background: 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. Objectives: 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. Methods: 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. Results: 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. Conclusion: 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.
KW - health policy
KW - hemophilia A
KW - hemophilia B
KW - patient satisfaction
KW - quality of health care
KW - telemedicine
UR - http://www.scopus.com/inward/record.url?scp=85160785210&partnerID=8YFLogxK
U2 - https://doi.org/10.1016/j.rpth.2023.100159
DO - https://doi.org/10.1016/j.rpth.2023.100159
M3 - Article
C2 - 37346462
SN - 2475-0379
VL - 7
JO - Research and practice in thrombosis and haemostasis
JF - Research and practice in thrombosis and haemostasis
IS - 4
M1 - 100159
ER -