Maria Fasshauer, Gesine Schuermann, Norbert Gebert, Horst von Bernuth, Monika Bullinger, Sigune Goldacker, Renate Krueger, Petra Manzey, Stefanie Messner, Ellen D. Renner, Henrike Ritterbusch, Uwe Schauer, Ilka Schulze, Volker Umlauf, Steffi Widmann, Ulrich Baumann
- Aim: To assess a patient empowerment program (PEP) for children/adolescents with primary immunodeficiency (PID) on IgG replacement therapy regarding quality of life (QoL) in patients and proxy.
Patients & methods: Health-related QoL was assessed using KIDSCREEN-27 and DISABKIDS-37 before and 6 months after PID-PEP kids in 19 children/adolescents and their parents.
Results: The following three dimensions of the KIDSCREEN-27 significantly increased in children/adolescents after PID-PEP kids as compared with baseline: Psychological Well-Being, Parents & Autonomy and School Environment. Total DISABKIDS-37 index, as well as 5 of the 6 DISABKIDS-37 dimensions, significantly increased, in other words, Independence, Emotion, Social Inclusion, Social Exclusion and Physical. Evaluation of proxy instruments showed comparable results.
Conclusion: PID-PEP kids significantly improved QoL in patients with PID.
