Evidence map›Paper›PMID 34764794›Full record

ArticleCentral-European journal of immunology2021

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

Maria Fasshauer, Gesine Schuermann, Norbert Gebert, Horst von Bernuth, Sigune Goldacker, Renate Krueger, Petra Manzey, Gundula Notheis, Henrike Ritterbusch, Uwe Schauer and 4 more

Open access · goldAbstract read
In one paragraph

Article in Central-European journal of immunology, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
0.3field-weighted citation impact, top 45% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed, 5 citations in OpenAlex.

  1. Article
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

14 authors at 9 institutions in 2 countries.

Maria FasshauerKlinikum St. Georg, Klinik für Kinder- und Jugendmedizin - ImmundefektCentrum Leipzig IDCL, Leipzig, Germany.
Gesine SchuermannMedizinische Hochschule Hannover, Immundefektambulanz, Hannover, Germany.
Norbert GebertPrivate Psychotherapeutische Praxis, Panketal, Germany.
Horst von BernuthDepartment of Pediatric Pulmonology, Immunology and Intensive Care Medicine, Charité Universitätsmedizin Berlin, Berlin, Germany.
Sigune GoldackerUniversitätsklinikum Freiburg, Medizinische Fakultät, Institut für Immundefizienz, Centrum für Chronische Immundefizienz (CCI), Freiburg, Germany.
Renate KruegerDepartment of Pediatric Pulmonology, Immunology and Intensive Care Medicine, Charité Universitätsmedizin Berlin, Berlin, Germany.
Petra ManzeyLudwig Maximilian Universität München, Dr. von Haunersches Kinderspital, Immundefektambulanz, München, Germany.
Gundula NotheisUniversitätsklinikum Augsburg, Kinderklinik, Immunologische Sprechstunde, Augsburg, Germany.
Henrike RitterbuschUniversitätsklinikum Freiburg, Medizinische Fakultät, Institut für Immundefizienz, Centrum für Chronische Immundefizienz (CCI), Freiburg, Germany.
Uwe SchauerRuhr-Universität Bochum, St. Josef Hospital, Klinik für Kinder- und Jugendmedizin, Bochum, Germany.
Ilka SchulzeKiJuMed-Gemeinschaftspraxis für Kinder- und Jugendmedizin sowie Kinder- und Jugendpsychotherapie, Bern, Switzerland.
Volker UmlaufDepartment of Pediatric Intensive Care, Inselspital University Hospital Bern, University Children's Hospital, Bern, Switzerland.
Steffi WidmannLudwig Maximilian Universität München, Dr. von Haunersches Kinderspital, Immundefektambulanz, München, Germany.
Ulrich BaumannMedizinische Hochschule Hannover, Immundefektambulanz, Hannover, Germany.
Charité - Universitätsmedizin Berlin · DELudwig-Maximilians-Universität München · DEMedizinische Hochschule Hannover · DEUniversity Medical Center Freiburg · DEKlinikum St. Georg · DEOrthopädische Praxis · DESt. Josef-Hospital · DEUniversity Hospital Augsburg · DEUniversity Hospital of Bern · CH

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionPrimary 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

methodsPID-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.

resultsMedian 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.

conclusionsOur 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.

Indexed as

education programmeIgG replacement therapypatient empowerment programmeprimary immunodeficiencyquality of lifetreatment satisfaction

Identifiers

PMID34764794
PMCPMC8568033
OpenAlexW3200590374

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-SA
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.