Barriers to hemophilia care: A survey of healthcare professionals

Elmira Kultanova, Zaure Dushimova, Anar Turmukhambetova, Yelena Ibrayeva, Raigul Ramazanova, Gulnara Kurmanova, Zh. S. Botagarina, Gulshahira Kambarova

2026

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DOI 10.54500/2790-1203-2026-3-126-amj022
Data confidence 85 high
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Abstract

Introduction. Hemophilia is a rare inherited bleeding disorder requiring multidisciplinary care, timely diagnosis, and continuous access to specialized treatment. Despite advances in replacement therapy, the quality of care depends largely on the organizational readiness of healthcare systems. Objective. To identify barriers to hemophilia care based on a cross-sectional survey of healthcare professionals. Methods. A cross-sectional survey was conducted among 101 healthcare professionals involved in hemophilia care, including general practitioners, pediatricians, hematologists, and nursing staff from primary healthcare facilities, regional hospitals, referral centers, and private organizations. A validated 33-item questionnaire assessed clinical competence, referral pathways, treatment accessibility, organizational barriers, and priorities for healthcare improvement. Descriptive statistics and Pearson's chi-square or Fisher's exact tests were applied (p<0.05). Results. Hematologists comprised 52.5% of respondents, and 52.5% had completed hemophilia-specific training within the previous three years. Most participants reported adequate knowledge of hemophilia manifestations (89.1%), clinical guidelines (63.4%), and prophylactic treatment (75.3%), with hematologists demonstrating significantly higher competence than primary healthcare physicians (all p<0.001). Knowledge of referral pathways was reported by 72.3% of respondents, whereas only 49.5% confirmed the availability of approved institutional referral pathways and 43.6% reported referral to a hematologist within 24 hours. Significant differences between professional groups were observed regarding referral pathway awareness, inter-level collaboration, and institutional referral systems (all p<0.05). Only 45.5% reported routine use of standardized clinical algorithms, 58.4% regular prophylactic follow-up, and 32.7% uninterrupted access to replacement therapy. Major barriers included procurement delays (26.7%), insufficient funding (19.8%), and poor coordination between healthcare providers (14.0%). Conclusion. Although healthcare professionals demonstrated generally satisfactory clinical competence, important organizational gaps remain. Strengthening standardized referral pathways, expanding primary care education, improving coordination between healthcare levels, ensuring uninterrupted access to replacement therapy, and establishing a national hemophilia registry are essential to improve comprehensive hemophilia care in Kazakhstan. Keywords: hemophilia, health services accessibility, delivery of health care, referral and consultation, health workers, survey.