A patient empowerment program for primary immunodeficiency improves quality of life in children and adolescents

Area of Science:

• Pediatric Immunology
• Quality of Life Research
• Patient Education

Background:

• Primary immunodeficiency (PID) impacts children's quality of life (QoL).
• IgG replacement therapy is a standard treatment for PID.
• Empowering patients can potentially improve health outcomes.

Purpose of the Study:

• To evaluate a patient empowerment program (PEP) for children with PID.
• To assess the program's impact on patient and proxy-reported QoL.
• To determine if PEP improves QoL in pediatric PID patients on IgG therapy.

Main Methods:

• Health-related QoL was measured using KIDSCREEN-27 and DISABKIDS-37.
• Assessments were conducted before and 6 months after the PID-PEP kids program.
• The study included 19 children/adolescents with PID and their parents.

Main Results:

• Significant improvements were observed in Psychological Well-Being, Parents & Autonomy, and School Environment (KIDSCREEN-27).
• Total DISABKIDS-37 scores and 5 dimensions (Independence, Emotion, Social Inclusion, Social Exclusion, Physical) increased significantly.
• Proxy evaluations mirrored the positive patient outcomes.

Conclusions:

• The PID-PEP kids program demonstrated a significant positive impact on QoL for children with PID.
• Patient empowerment strategies can effectively enhance the well-being of pediatric PID patients.
• The findings support the integration of PEP into standard care for children with PID.