Positive Impact of Prophylactic Treatment in the Social Integration of Children With Hemophilia

Abstract

Introduction: Hemophilia is a chronic disease, and as such it can affect the perceived competence of patients, especially children. A negative perception can result in psychosocial problems and maladjustment. A positive perception makes the person feel able to cope with the challenges of everyday life.

Aim: Evaluate the self‐perception of children with hemophilia compared with group of children without disease, and assessing whether the disease affects their personal development.

Methods: Cross‐sectional study. The sample was 58 children aged 8 to 12 years, 53% PHW and 47% healthy children, the average age 10.8 (SD: 1.20). We recorded clinical and physical data, the Self‐Perception Profile for Children (SPPC) and a Physical Activity Questionnaire (FELS‐PAQ). In the group of hemophilia we assess their status joint (HJHS) and physical functioning (HAL) children version.

Results: PWH show good joint status (M = 5.87; SD = 8.7), and a physical functionality within the average (M = 69.29, SD = 29.1). There are no significant differences between healthy children and PWH in self‐perception, both show a high perception of themselves (M = 23.4, SD = 6.67). Regarding physical activity, we observe significant differences in Sport Index (P < 0.05) and Work Index (P < 0.01), in the latter, the healthy children are worse than PWH severe. Positive correlation between age and perception of sporting competence (r = 0.25) and negative correlation with BMI (r = −0.25). Positive correlation between age and total score of physical activity (r = 0.29) and Leisure index (r = 0.26). Positive correlation between the perception of sports competence and Leisure index (r = 0.30).

Discussion/Conclusion: The impact of prophylactic treatment in children with hemophilia has involved a normalization in their lives. Differences with children without disease hardly exist, being essential to continue promoting adherence to treatment and education the child to their situation to achieve a good self‐care and autonomy throughout their life