Haemophilia Management in Natural Disasters-From Field to Consensus Report

The earthquake in Türkiye had a profound impact on both haemophilia patients and healthcare services in the region. This experience highlighted the need for an effective action plan for patients with bleeding disorders in extraordinary situations.

This is a cross-sectional survey study designed to identify the needs of patients and physicians, as well as problems in health services. Two questionnaires were prepared and analysed. The first questionnaire consists of 26 questions for patients, including physical problems, difficulties in accessing doctors/treatment, and storage problems. A focus group including 15 questions has been conducted with physicians.

A total of 10 patients (diagnosed with severe haemophilia A and B) and 8 physicians participated in the study. Most of them reported bleeding due to impact, difficulties in accessing factors/health services, and some of them had to change cities. Factors could not be stored in appropriate conditions due to damage/power outages. The physicians who participated in the study were paediatric haematologists. Since the institutions where some of them worked were damaged, working conditions/patient follow-up became difficult. Physicians had difficulty reaching their patients who had moved to other cities and assessing the level of factors in patients who applied.

This research revealed that managing chronically ill patients during disasters requires special attention. Patients emphasized the importance of knowing their health status in times of crisis. This article serves as a resource for consensus reports that associations may prepare.