Development of a Long-Term Cross-Sectoral Case and Care Management Manual for Patients With Severe Multiple Sclerosis and Their Caregivers

Anne Müller; Kim Dillen; Thomas Dojan; Solveig Ungeheuer; Yasemin Goereci; Veronika Dunkl; Raymond Voltz; Peter Löcherbach; Clemens Warnke; Heidrun Golla; (On Behalf of the KOKOS-MS Trial Group)

doi:10.1097/NCM.0000000000000608

Development of a Long-Term Cross-Sectoral Case and Care Management Manual for Patients With Severe Multiple Sclerosis and Their Caregivers

Prof Case Manag. 2023 Jul-Aug;28(4):183-193. doi: 10.1097/NCM.0000000000000608. Epub 2022 Dec 14.

Authors

Anne Müller^{1

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11}, Heidrun Golla^{1

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Affiliations

¹ KOKOS-MS trial group: Anne Müller, is from the Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Beatrix Münzberg, is from the Department of Neurology, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Clemens Warnke, is from the Department of Neurology, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Dirk Müller, is from the Faculty of Medicine and University Hospital, Institute for Health Economics and Clinical Epidemiology (IGKE), University of Cologne, Cologne, Germany. Dorthe Hobus, is from the Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Gundula Palmbach, is from the Faculty of Medicine and University Hospital, Clinical Trials Centre Cologne (CTCC), University of Cologne, Cologne, Germany. Heidrun Golla, is from the Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Isabel Franke, is from the Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Kim Dillen, is from the Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Martin Hellmich, is from the Faculty of Medicine and University Hospital, Institute of Medical Statistics and Computational Biology (IMSB), University of Cologne, Cologne, Germany. Monika Höveler, is from the Department of Neurology, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Solveig Ungeheuer, is from the Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Sophia Kochs, is from the Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Veronika Dunkl, is from the Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Yasemin Göreci, is from the Department of Neurology, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany.
² Anne Müller, MA , studied social work (BA) and rehabilitation sciences (MA). She is currently working as a researcher and case manager in the COCOS-MS study at the Department of Palliative Medicine of the University Hospital Cologne and perusing her PhD studies in health sciences at the University of Cologne.
³ Kim Dillen, PhD, is a postdoctoral researcher at the Department of Palliative Medicine of the University Hospital Cologne. She has published research carried out in various patient populations and has many years of research as well as clinical experience as neuropsychologist in both Canada and Germany.
⁴ Thomas Dojan, MSc, studied psychology (MSc) and philosophy (BA). He is a licensed psycho-oncologist (Deutsche Krebsgesellschaft), currently working as a researcher at the Department of Palliative Medicine of the University Hospital Cologne as well as perusing PhD studies in philosophy at the University of Cologne and The Polish Academy of Sciences.
⁵ Solveig Ungeheuer, BA, worked as a palliative care nurse and studied social work (BA). She is currently working as a certified case manager in the COCOS-MS study at the Department of Palliative Medicine of the University Hospital Cologne.
⁶ Yasemin Göreci, MD, is a neurology resident working in the department of neurology at the University Hospital of Cologne. She is a clinical scientist and study physician at the COCOS-MS research project. Her main research focus is neuroimmunology and clinical studies regarding patients with multiple sclerosis.
⁷ Veronika Dunkl, MD, studied medicine and is a specialist for neurology and palliative care medicine. She did her doctorate in medicine in 2015. She is currently working as a physician and project manager in the COCOS-MS study at the Department of Palliative Medicine of the University Hospital Cologne.
⁸ Raymond Voltz, MD, is professor and since 2004, he is chair for palliative medicine at the University Hospital Cologne, and currently, he is the chair of its research ethics committee. One of his research focuses is the improvement of care of severely affected patients in the palliative context.
⁹ Peter Loecherbach, PhD , is professor of social work at the Catholic University of Applied Sciences in Mainz, where he served as rector for 7 years. He studied social work and pedagogy. He is case management instructor and chairman of the German Society for Care and Case Management (DGCC).
¹⁰ Warnke, MD, is professor, consultant of neurology at the University Hospital Cologne since 2017. At his current affiliation, he is cohead of the MS center including an outpatient MS clinic. Focus of his research is clinical neuroimmunology, including clinical MS research and neurovirology with focus on progressive multifocal leukoencephalopathy (PML).
¹¹ Heidrun Golla, MD, professor, is neurologist, psychotherapist, pychoanalyst (DGIP), and palliative care physician. After her training as a neurologist at the University Clinic of Tübingen, she has been working at the Department of Palliative Medicine of the University Hospital Cologne since 2006.

PMID: 36518082
DOI: 10.1097/NCM.0000000000000608

Abstract

Purpose/objectives: Care and case management (CCM) aims to provide optimal care for patients and their caregivers on an individual and superordinate level of health care providers and authorities. To facilitate a clear and systematic CCM process as part of a clinical study intervention, a semistructured manual is the prerequisite.

Primary practice settings: The ongoing COCOS-MS (Communication, Coordination and Security for People with Multiple Sclerosis) study is a randomized controlled Phase II clinical intervention study. The CCM manual is being tested on the intervention group consisting of severely affected individuals with multiple sclerosis (MS; Expanded Disability Status Scale [EDSS] >5) and their caregivers receiving CCM for 12 months in addition to standard care. The intervention comprises monthly personal visits and weekly telephone calls during which the CCM manual is applied.

Findings/conclusions: The CCM manual has been developed on the basis of previous literature and well-established questionnaires following theoretical aspects and prior scientific work covering individual domains of life of people with MS. Within the COCOS-MS study, its feasibility is being tested meticulously. It allows for a standardized assessment while being tailored to the individual. At the end of the intervention period, it will be analyzed statistically and qualitatively. Consequently, conclusions can be drawn as to whether the CCM manual is feasible or has to be adapted for use in standard care after analyzation.

Implications for case management practice: The CCM manual serves as a tool for the continuous, long-term, cross-sectoral care for patients suffering from severe MS and their caregivers. The manual provides guidance in adequately addressing patients' complex symptoms, problems, and needs, as well as assessing existing resources both at the individual patient level and at a superordinate level.

Publication types

Randomized Controlled Trial
Clinical Trial, Phase II

MeSH terms

Caregivers
Case Management
Health Personnel
Humans
Long-Term Care
Multiple Sclerosis*