Contributions
Abstract: PB1758
Type: Publication Only
Session title: Quality of life, palliative care, ethics and health economics
Background
Hemophilia is an inherited bleeding disorder due to “clotting factor” deficiency which requires lifelong management and support. This is the first study created to address the needs of this special population of patients in the country.
Aims
To provide a comprehensive framework that can be offered for hemophilia care.
Methods
The researcher used the PRECEDE-PROCEED framework to assess the current status of hemophilia care by evaluating the epidemiology, beliefs, environmental factors, including medical, surgical, psycho-social aspects based on the retrospective data evaluation in the PRECEDE phase. The Haemo-HQOL questionnaire was used to evaluate the current status of patients 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 evaluated the current status of care with the use of a validated Haemo-HQOL which showed the different dimensions of interest according to age group.
Conclusion
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, behavioural and environmental problems of PWH confirmed that interventions may improve the quality of life of this population. Moreover, continuous monitoring and reevaluation will provide a good system to guide our pediatric hematologists regarding the practice of treating hemophilia patients.
Keyword(s): Hemophilia, Treatment
Abstract: PB1758
Type: Publication Only
Session title: Quality of life, palliative care, ethics and health economics
Background
Hemophilia is an inherited bleeding disorder due to “clotting factor” deficiency which requires lifelong management and support. This is the first study created to address the needs of this special population of patients in the country.
Aims
To provide a comprehensive framework that can be offered for hemophilia care.
Methods
The researcher used the PRECEDE-PROCEED framework to assess the current status of hemophilia care by evaluating the epidemiology, beliefs, environmental factors, including medical, surgical, psycho-social aspects based on the retrospective data evaluation in the PRECEDE phase. The Haemo-HQOL questionnaire was used to evaluate the current status of patients 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 evaluated the current status of care with the use of a validated Haemo-HQOL which showed the different dimensions of interest according to age group.
Conclusion
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, behavioural and environmental problems of PWH confirmed that interventions may improve the quality of life of this population. Moreover, continuous monitoring and reevaluation will provide a good system to guide our pediatric hematologists regarding the practice of treating hemophilia patients.
Keyword(s): Hemophilia, Treatment