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Cultural adaptation of the Integrated Palliative care Outcome Scale for neurological symptoms

Published online by Cambridge University Press:  11 April 2023

Kim Dillen Open the ORCID record for Kim Dillen [Opens in a new window] ,
Yasemin Goereci ,
Veronika Dunkl ,
Anne Müller ,
Gereon R. Fink ,
Raymond Voltz ,
Mevhibe Hocaoglu ,
Clemens Warnke  and
Heidrun Golla
Kim Dillen*
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Yasemin Goereci
Affiliation:
Department of Neurology, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Veronika Dunkl
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Anne Müller
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Gereon R. Fink
Affiliation:
Department of Neurology, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany Cognitive Neuroscience, Institute of Neuroscience and Medicine (INM-3), Research Centre Jülich, Jülich, Germany
Raymond Voltz
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany Clinical Trials Centre Cologne (CTCC), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany Center for Integrated Oncology Aachen Bonn Cologne Düsseldorf (CIO ABCD), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany Center for Health Services Research (ZVFK), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Mevhibe Hocaoglu
Affiliation:
Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London, London, UK
Clemens Warnke
Affiliation:
Department of Neurology, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Heidrun Golla
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
*
Author for correspondence: Kim Dillen, Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Kerpener Strasse 62, Cologne 50924, Germany. Email: kdillen3@uni-koeln.de
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Abstract

Objectives

Standardized measures for assessing neurological patients needing palliative care remain scarce. The Integrated Palliative care Outcome Scale for neurological patients in its short form (IPOS Neuro-S8) helps assess and identify patients’ symptom burden and needs early but has not yet been validated in German. The aim was to culturally adapt and translate the IPOS Neuro-S8 into the German health-care context and evaluate its face and content validity.

Methods

Cultural adaptation study following the first 6 out of 8 phases of the Palliative care Outcome Scale measures manual: (1) conceptual definition, (2) forward translation to German, (3) backward translation to English, (4) expert review, (5) cognitive debriefing, (6) proofreading. Neurological patients needing palliative care and clinical staff of the Department of Palliative Medicine or Neurology of the University Hospital of Cologne were included. Data were analyzed using thematic content analysis and descriptive statistics.

Results

A total of 13 patients and 16 clinical staff participated in this study. The expert review panel (phase 4) consisted of 11 additional members. While patients (n = 9) and clinical staff (n = 11) confirmed that the IPOS Neuro-S8 is an intelligible tool that is well accepted (phase 5), some linguistic and cultural differences were found between the original English and German versions. These mainly concerned the items mouth problems and spasms.

Significance of results

The German version of the IPOS Neuro-S8 has demonstrated face and content validity and captures relevant symptoms of neurological patients needing palliative care. Its psychometric properties, including construct and criterion validity, will be investigated next.

Keywords

Patient-related measureNeurological patients needing palliative careCultural adaptationCognitive interviewingGerman
Type
Original Article
Information
Palliative & Supportive Care , Volume 21 , Issue 6 , December 2023 , pp. 1059 - 1068
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Copyright
© The Author(s), 2023. Published by Cambridge University Press.

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Footnotes

*

This article has been updated since its original publication. See https://doi.org/10.1017/S1478951523000561.

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