Background: People affected by Multiple Sclerosis (MS) and their relatives suffer a great deal in physical, psychosocial and spiritual dimensions. However, due to the fluctuating and chronic time course of the disease, MS has so far not been the focus of palliative care.
Objective: To establish whether patients with MS in Germany have palliative care needs which may serve as a basis for future adaptation of services provided.
Methods/Results: In order not to be too intrusive, we have adapted a cautious four-step approach. First, we have developed a questionnaire for circulation among all 60 neurologists being member of the advisory board of the German MS society (DMSG) which should give a first impression on the situation and comments to improve the questionnaire. Secondly, the modified questionnaire will be circulated among all professional members of the DMSG. Thirdly, the patient?s view will be assessed qualitatively by personal interview of about 20 patients and their relatives living in a specialised MS nursing home. Using the items raised in these interviews, another questionnaire for patients and relatives will be developed to get a more quantitative view on the way services should be provided.
Discussion: Here we are faced with a situation of an "atypical" palliative care diagnosis where patients and neurologists alike so far are not used to talk about palliative care issues. At the end of the project we should be able to assess whether existing services provided really meet the needs of the patients.