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

Fasshauer, Maria; Schuermann, Gesine; Gebert, Norbert; von Bernuth, Horst; Goldacker, Sigune; Krueger, Renate; Manzey, Petra; Notheis, Gundula; Ritterbusch, Henrike; Schauer, Uwe; Schulze, Ilka; Umlauf, Volker; Widmann, Steffi; Baumann, Ulrich (2021). A structured patient empowerment programme for primary immunodeficiency significantly improves general and health-related quality of life. Central European journal of immunology, 46(2), pp. 244-249. Termedia Publishing House 10.5114/ceji.2021.107088

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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.

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