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

• Published in: Immunotherapy Vol. 16; no. 12; p. 813
• Main Authors: Fasshauer, Maria, Schuermann, Gesine, Gebert, Norbert, Bernuth, Horst von, Bullinger, Monika, Goldacker, Sigune, Krueger, Renate, Manzey, Petra, Messner, Stefanie, Renner, Ellen D, Ritterbusch, Henrike, Schauer, Uwe, Schulze, Ilka, Umlauf, Volker, Widmann, Steffi, Baumann, Ulrich
• Format: Journal Article
• Language: English
• Published: England 03.07.2024
• Subjects: Adolescent; Child; Child, Preschool; Empowerment; Female; Humans; Immunologic Deficiency Syndromes - psychology; Immunologic Deficiency Syndromes - therapy; Male; Parents - psychology; Patient Participation; Primary Immunodeficiency Diseases - immunology; Primary Immunodeficiency Diseases - therapy; Quality of Life; Surveys and Questionnaires; KIDSCREEN-27; primary immunodeficiency; inborn errors of immunity; DISABKIDS-37; IgG replacement therapy; quality of life; education program; patient empowerment program
• ISSN: 1750-7448
• DOI: 10.1080/1750743X.2024.2367924

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. 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. 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. PID-PEP kids significantly improved QoL in patients with PID.