title: Unmet needs of patients feeling severely affected by multiple sclerosis in Germany: a qualitative study.
abstract: BACKGROUND
  The needs of patients feeling severely affected by multiple sclerosis (MS) have rarely been investigated. However this is essential information to know before care can be improved, including adding palliative care (PC) services where helpful. Since it remains unclear at what point specialized palliative care should begin for this patient group, this study focuses on needs in general.
  
  
  OBJECTIVE
  The objective was to explore the subjectively unmet needs of patients feeling severely affected by MS.
  
  
  METHODS
  The study used a qualitative cross-sectional approach for needs assessment. Fifteen patients self-reporting feeling severely affected by MS were recruited and interviewed using a combination of purposive and convenience sampling (five were accompanied by a caregiver relative). Interviews were recorded and transcribed verbatim, followed by qualitative content analysis.
  
  
  RESULTS
  Unmet needs were identified in the main categories "support of family and friends," "health care services," "managing everyday life," and "maintaining biographical continuity." Patients expressed the desire for more support from their families and to be viewed as distinct individuals. They see a substantial deficit in the physician-patient relationship and in the coordination of services. A decrease in expressed unmet needs was found for patients more severely affected and less socially integrated.
  
  
  CONCLUSIONS
  To address the unmet needs of severely affected MS patients, health care services need to be improved and linked with existing PC services. Special attention is required to form supporting professional-patient relationships. Multiprofessional services should be accessible for patients, while integrating relatives. All services should have an individual approach to provide needs-tailored support.
authors: 1 Department of Palliative Medicine, University Hospital , Cologne, Germany .
authors: Maren
authors: M
authors: Galushko
authors: Heidrun
authors: H
authors: Golla
authors: Julia
authors: J
authors: Strupp
authors: Ute
authors: U
authors: Karbach
authors: Claudia
authors: C
authors: Kaiser
authors: Nicole
authors: N
authors: Ernstmann
authors: Holger
authors: H
authors: Pfaff
authors: Christoph
authors: C
authors: Ostgathe
authors: Raymond
authors: R
authors: Voltz
mesh_terms: D000328:Adult; D000368:Aged; D003430:Cross-Sectional Studies; D005260:Female; D005858:Germany; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000523:psychology / Q000628:therapy; D020380:Needs Assessment; D010166:Palliative Care; D036301:Qualitative Research; D012720:Severity of Illness Index; D055815:Young Adult