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

被引：3

作者：

Brands, Martijn R. ^{[1
,2
]}

Haverman, Lotte ^{[2
,3
]}

Muis, Jelmer J. ^{[2
,3
]}

Driessens, Mariette H. E. ^{[4
]}

van der Meer, Felix J. M. ^{[5
,6
]}

Goedhart, Geertje ^{[5
,6
]}

Meijer, Stephan ^{[4
]}

de Jong, Marianne ^{[7
]}

van der Bom, Johanna G. ^{[8
]}

Cnossen, Marjon H. ^{[9
]}

Fijnvandraat, Karin ^{[1
,2
,10
]}

Gouw, Samantha C. ^{[1
,2
,8
]}

机构：

[1] Univ Amsterdam, Amsterdam Univ Med Ctr Locat, Emma Childrens Hosp, Dept Pediat Hematol, Meibergdreef 9, NL-1105 AZ Amsterdam, Netherlands

[2] Amsterdam Reprod & Dev Publ Hlth, Amsterdam, Netherlands

[3] Univ Amsterdam, Amsterdam Univ Med Ctr Locat, Dept Child & Adolescent Psychiat Psychosocial Car, Emma Childrens Hosp, Meibergdreef 9, Amsterdam, Netherlands

[4] Netherlands Hemophilia Patient Soc, Nijkerk, Netherlands

[5] HemoNED Fdn, Leiden, Netherlands

[6] Leiden Univ Med Ctr, Dept Thrombosis & Hemostasis, Leiden, Netherlands

[7] BuroMD, Utrecht, Netherlands

[8] Leiden Univ Med Ctr, Dept Clin Epidemiol, Leiden, Netherlands

[9] Erasmus Univ, Erasmus Univ Med Ctr, Sophia Childrens Hosp, Dept Pediat Hematol, Rotterdam, Netherlands

[10] Sanquin Res & Landsteiner Lab, Dept Mol Cellular Hemostasis, Amsterdam, Netherlands

来源：

RESEARCH AND PRACTICE IN THROMBOSIS AND HAEMOSTASIS | 2023年 / 7卷 / 04期

关键词：

health policy; hemophilia A; hemophilia B; patient satisfaction; quality of health care; telemedicine; LIFE ASSESSMENT; OF-LIFE; CANADIAN HEMOPHILIA; OUTCOMES; VALIDATION; NEEDS;

D O I：

10.1016/j.rpth.2023.100159

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

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.

引用

页数：14

共 33 条

[1] Determinants of patient satisfaction: a systematic review [J].