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Zeitschrift für Epileptologie

, Volume 32, Issue 1, pp 59–67 | Cite as

Lebensqualität bei Epilepsie: Ein Überblick zum Forschungsstand – Teil 1: Konzeption, Forschungsschwerpunkte, Fragebogenentwicklung

  • Michael EndermannEmail author
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Zusammenfassung

Hintergrund

Seit den 1990er-Jahren ist in der Epileptologie Lebensqualität (Quality of Life [QOL]) bzw. gesundheitsbezogene Lebensqualität Gegenstand der klinischen Forschung. Dabei wird in einzelnen Studien meist nicht explizit erläutert, von welchem QOL-Konzept bzw. -Verständnis ausgegangen wird.

Ziele der Arbeit

In einem Überblick sollen die wichtigsten Ergebnisse der Forschung zur QOL bei Epilepsie aufgezeigt werden. Zunächst wird in diesem ersten Teil der Begriff „gesundheitsbezogene QOL“ erläutert. Im Anschluss wird auf zentrale Themen der Forschung zur QOL bei Epilepsie verwiesen. Als erster Forschungsschwerpunkt wird die Entwicklung spezifischer Fragebogen vorgestellt.

Material und Methoden

Die Archive der einschlägigen Fachzeitschriften Epilepsia, Epilepsy & Behavior sowie Seizure seit Beginn der 1990er-Jahre wurden daraufhin untersucht, ob in Publikationen QOL thematisiert oder QOL-Daten erhoben worden waren. Auf repräsentative Studien wird verwiesen.

Ergebnisse

Theoretisch ist zu unterscheiden zwischen allgemeiner und gesundheitsbezogener QOL. Vier Forschungsschwerpunkte konnten zur QOL bei Menschen mit Epilepsie identifiziert werden. Als Ergebnis für den Schwerpunkt 1, die Entwicklung von spezifischen QOL-Fragebogen, ist festzuhalten: Es gibt keinen verbindlichen Konsens hinsichtlich einzubeziehender QOL-Domänen. Epilepsiespezifische QOL-Messinstrumente sind aber in der Regel änderungssensitiver mit Bezug auf medizinische Interventionen als generische Fragebogen.

Schlussfolgerung

Das QOL-Konzept hat die Forschung zu psychosozialen Problemen bei Epilepsie befördert. Dabei wurde die subjektive Patientenperspektive fokussiert. Begriffliche Unschärfen bestehen jedoch bis heute und machen es erforderlich, jeweils genau zu fragen, welches QOL-Verständnis in einer Untersuchung zugrunde gelegt bzw. wie QOL operationalisiert wurde.

Schlüsselwörter

Lebensqualitäts-Konzepte Psychosoziale Probleme Forschungsschwerpunkte Patientenperspektive Fragebogenentwicklung 

Quality of life in epilepsy: an overview of the state of research – Part 1: conception, focal points of research, questionnaire development

Abstract

Background

In epileptology the quality of life (QOL) and health-related quality of life (HRQOL) have been the subject of clinical research since the 1990s. Nevertheless, QOL concepts and comprehension are only rarely explained in empirical studies.

Aim

This review summarizes the most important results of QOL research in epilepsy. In the first part the term HRQOL is explained. Afterwards main topics of QOL research are outlined and the development of epilepsy-specific QOL questionnaires is presented as the first research focus.

Material and methods

Beginning with the 1990s, the archives of the relevant specialist journals Epilepsia, Epilepsy & Behavior as well as Seizure were reviewed with respect to QOL concepts and QOL data. Representative studies on QOL in epilepsy are presented.

Results

Theoretically, a differentiation must be made between general QOL and HRQOL and four main topics of QOL research in people with epilepsy could be identified. Studies on the first research focus, the development of epilepsy-specific QOL questionnaires, demonstrated the following: there is no binding consensus on epilepsy domains that have to be implemented. Epilepsy-specific QOL instruments are as a rule more sensitive to changes with respect to medical interventions than generic questionnaires.

Conclusion

The QOL concept has stimulated research on psychosocial problems in epilepsy. The subjective perspective of the patient received special attention; however, a lack of conceptual clarity persists and makes it necessary to question which QOL conceptions are the basis for a study and how QOL was operationalized in epilepsy studies.

Keywords

Quality of life concepts Psychosocial problems Topics of QOL research Perspective of the patient Development of questionnaires 

Notes

Einhaltung ethischer Richtlinien

Interessenkonflikt

M. Endermann gibt an, dass kein Interessenkonflikt besteht.

Dieser Beitrag beinhaltet keine vom Autor durchgeführten Studien an Menschen oder Tieren.

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Copyright information

© Springer Medizin Verlag GmbH, ein Teil von Springer Nature 2018

Authors and Affiliations

  1. 1.Psychologischer Fachdienst Bethel.regionalvon Bodelschwinghsche Stiftungen BethelBielefeldDeutschland

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