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

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

doi:10.1080/1750743X.2024.2367924

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

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

Assistant Professorship of Translational Immunology in Environmental Health

Children's Hospital
Hannover Medical School
Private Psychotherapeutische Praxis
Charité – Universitätsmedizin Berlin
Charite Universitätsmedizin Berlin
University Medical Center Hamburg-Eppendorf
University of Freiburg
Ludwig-Maximilians-Universität München
University Hospital Augsburg
Huntington-Zentrum (NRW) Bochum im St. Josef Hospital
KiJuMed-Gemeinschaftspraxis für Kinder- und Jugendmedizin sowie Kinder- und Jugendpsychotherapie
University Children's Hospital of Bern

Research output: Contribution to journal › Article › peer-review

3 Scopus citations

Abstract

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.

Original language	English
Pages (from-to)	813-819
Number of pages	7
Journal	Immunotherapy
Volume	16
Issue number	12
DOIs	https://doi.org/10.1080/1750743X.2024.2367924
State	Published - 2024

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being
SDG 10 Reduced Inequalities

Keywords

DISABKIDS-37
IgG replacement therapy
KIDSCREEN-27
education program
inborn errors of immunity
patient empowerment program
primary immunodeficiency
quality of life

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10.1080/1750743X.2024.2367924

Cite this

Fasshauer, M., Schuermann, G., Gebert, N., Bernuth, H. V., Bullinger, M., Goldacker, S., Krueger, R., Manzey, P., Messner, S., Renner, E. D., Ritterbusch, H., Schauer, U., Schulze, I., Umlauf, V., Widmann, S., & Baumann, U. (2024). A patient empowerment program for primary immunodeficiency improves quality of life in children and adolescents. Immunotherapy, 16(12), 813-819. https://doi.org/10.1080/1750743X.2024.2367924

@article{21a10a5a54254cdf92c2b65ba5213478,

title = "A patient empowerment program for primary immunodeficiency improves quality of life in children and adolescents",

abstract = "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.",

keywords = "DISABKIDS-37, IgG replacement therapy, KIDSCREEN-27, education program, inborn errors of immunity, patient empowerment program, primary immunodeficiency, quality of life",

author = "Maria Fasshauer and Gesine Schuermann and Norbert Gebert and Bernuth, \{Horst von\} and Monika Bullinger and Sigune Goldacker and Renate Krueger and Petra Manzey and Stefanie Messner and Renner, \{Ellen D.\} and Henrike Ritterbusch and Uwe Schauer and Ilka Schulze and Volker Umlauf and Steffi Widmann and Ulrich Baumann",

note = "Publisher Copyright: {\textcopyright} 2024 The Author(s). Published by Informa UK Limited, trading as Taylor \& Francis Group.",

year = "2024",

doi = "10.1080/1750743X.2024.2367924",

language = "English",

volume = "16",

pages = "813--819",

journal = "Immunotherapy",

issn = "1750-743X",

publisher = "Taylor and Francis Ltd.",

number = "12",

}

Fasshauer, M, Schuermann, G, Gebert, N, Bernuth, HV, Bullinger, M, Goldacker, S, Krueger, R, Manzey, P, Messner, S, Renner, ED, Ritterbusch, H, Schauer, U, Schulze, I, Umlauf, V, Widmann, S & Baumann, U 2024, 'A patient empowerment program for primary immunodeficiency improves quality of life in children and adolescents', Immunotherapy, vol. 16, no. 12, pp. 813-819. https://doi.org/10.1080/1750743X.2024.2367924

TY - JOUR

T1 - A patient empowerment program for primary immunodeficiency improves quality of life in children and adolescents

AU - Fasshauer, Maria

AU - Schuermann, Gesine

AU - Gebert, Norbert

AU - Bernuth, Horst von

AU - Bullinger, Monika

AU - Goldacker, Sigune

AU - Krueger, Renate

AU - Manzey, Petra

AU - Messner, Stefanie

AU - Renner, Ellen D.

AU - Ritterbusch, Henrike

AU - Schauer, Uwe

AU - Schulze, Ilka

AU - Umlauf, Volker

AU - Widmann, Steffi

AU - Baumann, Ulrich

PY - 2024

Y1 - 2024

N2 - 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.

AB - 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.

KW - DISABKIDS-37

KW - IgG replacement therapy

KW - KIDSCREEN-27

KW - education program

KW - inborn errors of immunity

KW - patient empowerment program

KW - primary immunodeficiency

KW - quality of life

UR - https://www.scopus.com/pages/publications/85199968530

U2 - 10.1080/1750743X.2024.2367924

DO - 10.1080/1750743X.2024.2367924

M3 - Article

C2 - 39073437

AN - SCOPUS:85199968530

SN - 1750-743X

VL - 16

SP - 813

EP - 819

JO - Immunotherapy

JF - Immunotherapy

IS - 12

ER -

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

Abstract

UN SDGs

Keywords

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