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 (2024). A patient empowerment program for primary immunodeficiency improves quality of life in children and adolescents. Immunotherapy, 16(12), pp. 813-819. Taylor & Francis 10.1080/1750743X.2024.2367924
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A_patient_empowerment_program_for_primary_immunodeficiency_improves_quality_of_life_in_children_and_adolescents.pdf - Published Version Available under License Creative Commons: Attribution-Noncommercial-No Derivative Works (CC-BY-NC-ND). Download (1MB) | Preview |
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.
Item Type: |
Journal Article (Original Article) |
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Division/Institute: |
04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine |
UniBE Contributor: |
Umlauf, Volker Nils |
Subjects: |
600 Technology > 610 Medicine & health |
ISSN: |
1750-7448 |
Publisher: |
Taylor & Francis |
Language: |
English |
Submitter: |
Pubmed Import |
Date Deposited: |
30 Jul 2024 09:34 |
Last Modified: |
02 Oct 2024 00:14 |
Publisher DOI: |
10.1080/1750743X.2024.2367924 |
PubMed ID: |
39073437 |
Uncontrolled Keywords: |
DISABKIDS-37 IgG replacement therapy KIDSCREEN-27 education program inborn errors of immunity patient empowerment program primary immunodeficiency quality of life |
BORIS DOI: |
10.48350/199369 |
URI: |
https://boris.unibe.ch/id/eprint/199369 |
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