title: Palliative care for severely affected patients with multiple sclerosis: when and why? Results of a Delphi survey of health care professionals.
abstract: BACKGROUND
  Patients severely affected by multiple sclerosis (MS) present with complex symptoms and needs requiring an interdisciplinary care approach.
  
  
  OBJECTIVE
  Analysis of when and why specialized palliative care integration would be beneficial via examining health care professionals' attitudes.
  
  
  METHODS
  A two-round online Delphi study and expert workshop were undertaken and analyzed descriptively.
  
  
  METHODS
  Following an extensive online search, 164 professionals with expertise in treating and caring for severely affected patients with MS were contacted. Professionals included neurologists, urologists, general practitioners, MS nurses, speech therapists, physiotherapists, psychologists, and palliative care physicians. Forty-six consented to participate: 33 of 46 (71.4%) and 15 of 33 (45.5%) experts responded in the first and second round, respectively.
  
  
  RESULTS
  Consensus was reached among all respondents (100%) defining the term "severely affected": 78.8% and 86.7%, respectively, thought that specialized palliative care should begin once the disease has progressed (Expanded Disability Status Scale [EDSS]>6 and nursing care required). When the need exists for communication about disease progression (93.3%), psychological support (93.3%), relatives support (93.3%), and pain medication (86.7%) specialized palliative care should be consulted. Specialized palliative homecare was rated (93.3%) "very important." The workshop documented the paucity of home visits and specialized MS care in nursing homes.
  
  
  CONCLUSIONS
  Our results clearly identified specific areas in which palliative care will likely prove to be a valuable asset in the treatment course of MS. This information should serve clinicians, indicating when to consider palliative care services and help further reduce or eliminate uncertainty about how palliative care can be integrated in the course of MS.
authors: 1 Department of Palliative Medicine, University Hospital of Cologne , Cologne, Germany .
authors: Julia
authors: J
authors: Strupp
authors: Vanessa
authors: V
authors: Romotzky
authors: Maren
authors: M
authors: Galushko
authors: Heidrun
authors: H
authors: Golla
authors: Raymond
authors: R
authors: Voltz
mesh_terms: D000488:Allied Health Personnel / Q000523:psychology; D001291:Attitude of Health Personnel; D003697:Delphi Technique; D005858:Germany; D006801:Humans; D008503:Medical Staff / Q000523:psychology; D009103:Multiple Sclerosis / Q000628:therapy*; D010166:Palliative Care / Q000379:methods*; D011795:Surveys and Questionnaires