Журнал гематологии и тромбоэмболических заболеваний
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ISSN: 2329-8790
ISSN: 2329-8790
Nuqui, Paula Bianca E, Hernandez Flerida G, Macindo, John Rey B
Hemophilia is an inherited bleeding disorder diagnosed by deficiency of proteins in the blood called “clotting factors”.It is a lifelong disease that requires factor replacement in times of bleeding, hence, continued support by providing a holistic program to address their needs is warranted.
Aims: To provide a comprehensive framework of care that can be offered by evaluating the quality of life, knowing the epidemiology, beliefs, environmental factors, including medical, surgical, psycho-social aspects of hemophilia care.
Methods: The researcher used the PRECEDE-PROCEED framework to assess the current status of he-mophilia care in a tertiary medical institution that may be used to create programs based on the retrospective data evaluation in the PRECEDE phase. The Haemo-HQOL questionnaire was used to evaluate the current status of patients seen as part of the PROCEED phase.
Results: A total of 202 patients were seen in the institution over the past three years. Important factors identified were the ability to manage bleeding episodes at home, challenges due to limited supply of factor concentrate and cost of treatment. The availability of patient support groups and provision of donated factor concentrates provided improvement in the care of persons with hemophilia (PWH).The PROCEED phase reevaluated the current status of care with the use of a validated Haemo-HQOL which showed the different dimensions of interest according to age group.
Conclusions: The study provided a comprehensive framework of care and service that can be offered to PWH. Evidences regarding the importance of creating a specialized treatment center to cater hemophilia patients despite the difficult political, socio-economic, behavioral and environmental problems of PWH confirmed that interventions will improve the quality of life of this population. Moreover, continuous monitoring and reevaluation will provide a good system to guide our pediatrichematologists regarding the practice of treating hemophilia patients.