Universität zu Köln

Dillen, Kim ORCID: 0000-0002-0270-3338, Müller, Wiebke, Hellmich, Martin ORCID: 0000-0001-5174-928X, Goereci, Yasemin, Dunkl, Veronika ORCID: 0000-0001-6885-7666, Dorr, Anne ORCID: 0000-0002-2456-2492, Fink, Gereon R. ORCID: 0000-0002-8230-1856, Voltz, Raymond ORCID: 0000-0002-4761-3395, Hocaoglu, Mevhibe, Warnke, Clemens ORCID: 0000-0002-3510-9255 and Golla, Heidrun ORCID: 0000-0002-4403-630X (2025). Cross-cultural validation of the integrated palliative outcome scale for neurological patients (IPOS-Neuro S8) in multiple sclerosis patients. Palliative and Supportive Care, 23. pp. 1-9. Cambridge University Press. ISSN 1478-9515

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Abstract

[Artikel-Nr. e110] Objectives: Standardized measures to evaluate neurological patients in palliative care are missing. The Integrated Palliative Outcome Scale, a self-report tailored for neurological patients (IPOS Neuro-S8) helps identify symptom burden but lacks validation in German. This study aimed to validate the IPOS Neuro-S8 in severely affected multiple sclerosis (MS) patients. Methods: This validation study is a secondary analysis of data from a clinical phase II intervention study with severely affected MS patients. The original study enrolled German-speaking patients aged 18 with severe MS who receive an escalating immunotherapeutic agent and/or exhibit a high level of disability were recruited from the administrative district Cologne (#DRKS00021783). In this validation study, we evaluated construct, discriminant, and convergent validity, internal consistency, test–retest reliability, and sensitivity to change of the IPOS Neuro-S8, using the “Hamburger Lebensqualitätsmessinstrument” (HALEMS), and the Hospice and Palliative Care Evaluation supplemented by neurological symptoms (HOPE+) as comparison measures. Results: Data from 80 MS patients (mean age 56, SD = 11) were analyzed. Exploratory and confirmatory factor analyses revealed a 3-factor structure ( r = 0.34–0.63), reflecting distinct clinical patterns, i.e., breath-mouth connection, pain-sleep cycle , and nausea-vomiting link . Significant convergent validity to hypothesized total score of the HOPE+ ( r s (78) = 0.71, p < 0.001) and good discriminant validity using the HALEMS total score ( r s (78) = 0.48, p < 0.001) were observed. Correlation with physical symptoms of the HALEMS was stronger than with nonphysical aspects. Internal consistency (Cronbach’s α = 0.67) and test–retest reliability (intraclass coefficient = 0.75) were acceptable. Significance of results: IPOS Neuro-S8 displays promising psychometric properties for assessing palliative care symptoms in severe MS, a model for other severe neurological diseases due to MS's broad central nervous involvement, allowing findings to be transferable to other neurological diseases. A criterion for minimal clinically important difference was established to evaluate the sensitivity to change. Additional validation across different neurological conditions and disease severities is warranted to enhance generalizability and clinical utility.

Item Type:	Article
Creators:	Creators Email ORCID ORCID Put Code Dillen, Kim UNSPECIFIED https://orcid.org/0000-0002-0270-3338 UNSPECIFIED Müller, Wiebke UNSPECIFIED UNSPECIFIED UNSPECIFIED Hellmich, Martin UNSPECIFIED https://orcid.org/0000-0001-5174-928X UNSPECIFIED Goereci, Yasemin UNSPECIFIED UNSPECIFIED UNSPECIFIED Dunkl, Veronika UNSPECIFIED https://orcid.org/0000-0001-6885-7666 UNSPECIFIED Dorr, Anne UNSPECIFIED https://orcid.org/0000-0002-2456-2492 UNSPECIFIED Fink, Gereon R. UNSPECIFIED https://orcid.org/0000-0002-8230-1856 UNSPECIFIED Voltz, Raymond UNSPECIFIED https://orcid.org/0000-0002-4761-3395 UNSPECIFIED Hocaoglu, Mevhibe UNSPECIFIED UNSPECIFIED UNSPECIFIED Warnke, Clemens UNSPECIFIED https://orcid.org/0000-0002-3510-9255 UNSPECIFIED Golla, Heidrun UNSPECIFIED https://orcid.org/0000-0002-4403-630X UNSPECIFIED
URN:	urn:nbn:de:hbz:38-799278
Identification Number:	10.1017/S1478951525000392
Journal or Publication Title:	Palliative and Supportive Care
Volume:	23
Page Range:	pp. 1-9
Date:	3 June 2025
Publisher:	Cambridge University Press
ISSN:	1478-9515
Language:	English
Faculty:	Central Institutions / Interdisciplinary Research Centers Faculty of Medicine
Divisions:	Außeruniversitäre Forschungseinrichtungen > Forschungszentrum Jülich Faculty of Medicine > Medizinische Statistik und Bioinformatik > Institut für Medizinische Statistik und Bioinformatik � IMSB Faculty of Medicine > Neurologie > Klinik und Poliklinik für Neurologie Faculty of Medicine > Palliativmedizin > Zentrum für Palliativmedizin Faculty of Medicine > Weitere > Centrum für integrierte Onkologie (CIO) Faculty of Medicine > Weitere > Zentrum für Versorgungsforschung Köln
Subjects:	Medical sciences Medicine
['eprint_fieldname_oa_funders' not defined]:	Publikationsfonds UzK
Refereed:	Yes
URI:	http://kups.ub.uni-koeln.de/id/eprint/79927