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@ARTICLE{Dillen:1044508,
      author       = {Dillen, Kim and Müller, Wiebke and Hellmich, Martin and
                      Goereci, Yasemin and Dunkl, Veronika and Dorr, Anne and
                      Fink, Gereon R. and Voltz, Raymond and Hocaoglu, Mevhibe and
                      Warnke, Clemens and Golla, Heidrun},
      title        = {{C}ross-cultural validation of the integrated palliative
                      outcome scale for neurological patients ({IPOS}-{N}euro
                      {S}8) in multiple sclerosis patients},
      journal      = {Palliative $\&$ supportive care},
      volume       = {23},
      issn         = {1478-9515},
      address      = {Cambridge [u.a.]},
      publisher    = {Cambridge Univ. Press},
      reportid     = {FZJ-2025-03245},
      pages        = {e110},
      year         = {2025},
      abstract     = {AbstractObjectives: 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+ (rs(78) =
                      0.71, p < 0.001) and good discriminant validity using the
                      HALEMS total score (rs(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.Keywords: German; Palliative care concerns;
                      outcome measurement; prospective observational design;
                      symptom burden.},
      cin          = {INM-3},
      ddc          = {610},
      cid          = {I:(DE-Juel1)INM-3-20090406},
      pnm          = {5251 - Multilevel Brain Organization and Variability
                      (POF4-525)},
      pid          = {G:(DE-HGF)POF4-5251},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {40459234},
      UT           = {WOS:001501412500001},
      doi          = {10.1017/S1478951525000392},
      url          = {https://juser.fz-juelich.de/record/1044508},
}