Background: Establishing the educational needs of health professionals, caregivers and patients diagnosed with hereditary coagulopathies, taking into account deficiencies, activities and their participation in the social context, allows to propose educational strategies that are in accordance with the individual and collective reality
Aims: Assess the educational needs of professionals and the level of digital information health literacy of people with orphan hematological diseases and their caregivers, as the basis for a proposal for an educational strategy that promotes self-care, adherence, comprehensive care and humanization of the service
Methods: Documentary review of the national context according to the epidemiological bulletin "Behavior of notification to Sivigila of orphan diseases - Rare, Colombia, 2016 to EW 04 of 2021", 42,560 cases of orphan diseases have been notified to Sivigila in the In the country, the most important are diseases of the central nervous system followed by diseases of the blood and hematopoietic organs, with congenital deficiency of factor VIII with 1,801 and von Willebrand disease with 1,726 with the highest prevalence
Results: There is significant inequality between people with orphan diseases who are disadvantaged compared to the general population and people with common chronic diseases. This can be attributed to "the challenges in accessing diagnoses, medical information, treatment, psychosocial support, and coping with stigma and uncertainty"; demonstrates the need for a global approach based on efforts by both health care institutions, as well as the community and patients
Conclusion(s): It is a priority to propose strategies in health education aimed at the population with hereditary coagulopathies, professionals and caregivers based on the results of instruments that allow determining educational needs with the measurement of the rate of literacy in health and digital health in people diagnosed with diseases orphan hematological diseases and their caregivers, the level of understanding and educational needs of professionals part of health care
