Health Condition 1: D66- Hereditary factor VIII deficiency
Conditions
Sponsors
manipal college of nursing
Eligibility
Inclusion criteria
Inclusion criteria: 1.Confirmed diagnosis of Hemophilia A or B (moderate or severe). Affiliated with or registered under a Hemophilia Society. Aged 6 to less than or equal to 18 years. Able to understand Telugu or English. Willing to participate with caregiver (mother) consent and personal assent
Exclusion criteria
Exclusion criteria:
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Evaluation of financial hardships, including treatment costs, loss of income, and healthcare access barriers. Analysis of how psychosocial support influence annual bleed rate(ABR), physical activity and QOL. Analysis of how economic cost of care influence annual bleed rate(ABR), physical activity and QOL. Identification of barriers to timely care, including financial constraints and lack of social support. Development of strategies to improve psychosocial support, financial assistance, and comprehensive haemophilia care programs. Timepoint: Evaluation of financial hardships, including treatment costs, loss of income, and healthcare access barriers. Analysis of how psychosocial support influence annual bleed rate(ABR), physical activity and QOL. Analysis of how economic cost of care influence annual bleed rate(ABR), physical activity and QOL. Identification of barriers to timely care, including financial constraints and lack of social support. Development of strategies to improve psychosocial support, financial assistance, and comprehensive haemophilia care programs. | — |
Secondary
| Measure | Time frame |
|---|---|
| Development of strategies to improve psychosocial support, financial assistance, and comprehensive haemophilia care programs.Timepoint: Development of strategies to improve psychosocial support, financial assistance, and comprehensive haemophilia care programs. | — |
Countries
India
Contacts
Public ContactRANI BURUGU
manipal college of nursing
Outcome results
None listed