[Hemophilia camps.]

Area of Science:

• Pediatric Hematology
• Patient Education Programs
• Chronic Disease Management

Background:

• Hemophilia requires comprehensive patient and family education for effective management.
• Promoting self-sufficiency is crucial for improving the quality of life for individuals with hemophilia.
• The Instituto Mexicano del Seguro Social initiated hemophilia camps to address these needs.

Purpose of the Study:

• To evaluate the impact of hemophilia camps on patient and family preparedness for disease management.
• To promote self-sufficiency and assess its effect on the course of hemophilia.
• To gather patient feedback on treatment and program effectiveness.

Main Methods:

• A national hemophilia camp was conducted involving 56 patients (average age 14 years).
• Surveys were administered to assess knowledge of treatment and collect personal opinions.
• Data included patient demographics, hemophilia severity, and family history.

Main Results:

• Participants demonstrated increased knowledge of early bleeding identification and self-infusion techniques.
• Patients gained awareness of their responsibility in self-care, timely treatment, and home-based management.
• Significant benefits included enhanced self-sufficiency and the formation of social support networks.

Conclusions:

• Hemophilia camps serve as an effective platform for attitude modification and improving self-care in patients.
• These camps are a valuable option for preventing disease complications through enhanced patient education and support.
• The program successfully fostered a sense of responsibility and independence among hemophilia patients.