Fasshauer, MariaMariaFasshauerSchuermann, GesineGesineSchuermannGebert, NorbertNorbertGebertBernuth, Horst vonHorst vonBernuthBullinger, MonikaMonikaBullingerGoldacker, SiguneSiguneGoldackerKrueger, RenateRenateKruegerManzey, PetraPetraManzeyMessner, StefanieStefanieMessnerRenner, Ellen DEllen DRennerRitterbusch, HenrikeHenrikeRitterbuschSchauer, UweUweSchauerSchulze, IlkaIlkaSchulzeUmlauf, Volker NilsVolker NilsUmlaufWidmann, SteffiSteffiWidmannBaumann, UlrichUlrichBaumann2024-10-262024-10-262024-07-29https://boris-portal.unibe.ch/handle/20.500.12422/179473Aim: 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.enDISABKIDS-37 IgG replacement therapy KIDSCREEN-27 education program inborn errors of immunity patient empowerment program primary immunodeficiency quality of life600 - Technology::610 - Medicine & healtharticle10.48350/1993693907343710.1080/1750743X.2024.2367924