Bridging the gap: Survey highlights challenges and solutions in outreach and identification of people with inherited bleeding disorders

• Published in: Haemophilia : the official journal of the World Federation of Hemophilia 2023-11, Vol.29 (6), p.1456-1466
• Main Authors: Hagembe, Juliana, Baumann, Alain, Santaella, Maria E., Sannie, Thomas, Lambert, Catherine, Cruickshank, Anne Louise, Gaitan‐Fitch, Carlos, Suwantaroj, Ekawat, Garrido, Cesar, Mekhuzla, Salome
• Format: Article
• Language: English
• Subjects: Bleeding; Blood coagulation; blood coagulation disorders; capacity building; Clotting; Collaboration; community outreach; community‐institutional relations; cooperative behaviour; Diagnosis; government; health services accessibility; Hemophilia; inherited; Muscles; patient identification systems; policy; Statistical analysis; Surveys
• ISSN: 1351-8216; 1365-2516
• DOI: 10.1111/hae.14862

Introduction Inherited bleeding disorders (IBD) are genetic conditions that affect blood clotting, leading to complications such as prolonged or spontaneous bleeding into muscles or joints. Early identification and treatment are crucial to prevent complications and improve outcomes. However, effective patient outreach and identification programs for IBD face significant challenges globally. Aim This study aimed to identify successful patient outreach initiatives for IBD, barriers encountered during implementation, and approaches used to overcome them. Methods The World Federation of Haemophilia (WFH) conducted a survey of its national member organizations and other patient associations, totalling 153 organizations, to identify common strategies, barriers to their implementation, and solutions for outreach and the identification of people with IBD. The survey consisted of both closed‐ended and open‐ended questions, and the data were analysed using descriptive statistics and thematic analysis. Results Common challenges included resource and sustainability‐related aspects such as financial constraints, limited lab equipment for diagnosis, and inadequate government commitment. Significant barriers also encompassed physical/geographical challenges like difficulty accessing remote areas, and inadequate logistical support and transportation. Seven themes emerged to enhance patient outreach: resource mobilization; awareness‐raising and advocacy; knowledge and capacity building; collaboration and partnership; decentralization of services; improved logistical support and infrastructure; utilization of technology and innovation; and financial aid and incentives. Conclusion Multistakeholder collaboration, coupled with secured government commitment, is crucial for improving global outreach, diagnosis rates, and access to care for individuals with IBD. Customized outreach programs should consider regional contexts, financial constraints, and prioritize innovation.