eISSN: 1644-4124
ISSN: 1426-3912
Central European Journal of Immunology
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2/2021
vol. 46
 
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abstract:
Clinical immunology

A structured patient empowerment programme for primary immunodeficiency significantly improves general and health-related quality of life

Maria Fasshauer
1
,
Gesine Schuermann
2
,
Norbert Gebert
3
,
Horst von Bernuth
4
,
Sigune Goldacker
5
,
Renate Krueger
4
,
Petra Manzey
6
,
Gundula Notheis
7
,
Henrike Ritterbusch
5
,
Uwe Schauer
8
,
Ilka Schulze
9
,
Volker Umlauf
10
,
Steffi Widmann
6
,
Ulrich Baumann
2

  1. Klinikum St. Georg, Klinik für Kinder- und Jugendmedizin – ImmundefektCentrum Leipzig IDCL, Leipzig, Germany
  2. Medizinische Hochschule Hannover, Immundefektambulanz, Hannover, Germany
  3. Private Psychotherapeutische Praxis, Panketal, Germany
  4. Department of Pediatric Pulmonology, Immunology and Intensive Care Medicine, Charité Universitätsmedizin Berlin, Berlin, Germany
  5. Universitätsklinikum Freiburg, Medizinische Fakultät, Institut für Immundefizienz, Centrum für Chronische Immundefizienz (CCI), Freiburg, Germany
  6. Ludwig Maximilian Universität München, Dr. von Haunersches Kinderspital, Immundefektambulanz, München, Germany
  7. Universitätsklinikum Augsburg, Kinderklinik, Immunologische Sprechstunde, Augsburg, Germany
  8. Ruhr-Universität Bochum, St. Josef Hospital, Klinik für Kinder- und Jugendmedizin, Bochum, Germany
  9. KiJuMed-Gemeinschaftspraxis für Kinder- und Jugendmedizin sowie Kinder- und Jugendpsychotherapie, Bern, Switzerland
  10. Department of Pediatric Intensive Care, Inselspital University Hospital Bern, University Children’s Hospital, Bern, Switzerland
Cent Eur J Immunol 2021; 46 (2): 244-249
DOI: https://doi.org/10.5114/ceji.2021.107088
Online publish date: 2021/06/20
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Introduction
Primary immunodeficiencies (PIDs) are a heterogeneous group of rare diseases characterized by increased susceptibility to infections and a reduced quality of life (QoL). The influence of a patient empowerment programme for PID (PID-PEP) on general and health-related QoL was assessed in the present study.

Material and methods
PID-PEP is provided by a multidisciplinary team for patients with PID and immunoglobulin G (IgG) replacement therapy during a weekend course to improve patient self-management regarding chronic disease and long-term therapy. Twenty-six adult patients with PID undergoing PID-PEP were recruited. Short Form-36 (SF-36) and the Life Quality Index (LQI) were assessed as generic and disease-specific QoL instruments before as well as 6 months after the programme.

Results
Median visual analogue scale (VAS) values of present health status significantly increased from 68 at baseline to 76 after PID-PEP (p = 0.002). Furthermore, the SF-36 mental component summary (MCS) significantly improved from 36 to 43 following the programme (p = 0.042). Of the eight SF-36 dimensions, vitality (VT) significantly improved (p = 0.025). Median LQI index significantly increased from 77 at baseline to 86 after PID-PEP (p = 0.008). Furthermore, the LQI domains treatment interference (I) and therapy-related problems (II) significantly improved.

Conclusions
Our PID-PEP significantly improved general and health-related QoL. It needs to be evaluated in future studies whether the beneficial effects of PID-PEP are sustained over longer periods of time and whether repeated PID-PEP sessions further improve QoL outcome.

keywords:

education programme, IgG replacement therapy, patient empowerment programme, primary immunodeficiency, treatment satisfaction, quality of life
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