Background: The situation for people feeling severely affected by Multiple Sclerosis (MS) remains largely unexamined and the term 'severe MS' is not clearly defined.
Aim: Our study describes this sub-group of patients utilizing exclusively a subjective inclusion criterion to analyse their reasons for feeling severely affected and document their perceived unmet needs.
Design: A questionnaire with open- and closed-ended items addressing only patients feeling severely affected was sent out nationwide. Expanded Disability Status Score (EDSS) and subjectively severe affectedness were analysed for correlation. After dichotomizing both scores by a median split, the answers were allocated to these groups and tested for significant differences.
Setting/participants: 1,110 questionnaires were analysed regarding the closed-ended questions while a subsample of 40% (n = 445) was analysed regarding the open-ended questions. Average age of participants was 51.87 years. Average time since diagnosis was 16.6 years. Main course of the disease was secondary progressive (35.5%).
Results: The most frequently mentioned reasons for feeling severely affected were lack of mobility (56.4%) and fatigue (27.4%). Significant percentages for unmet needs were seen in the categories of funding services (31.0%), better social integration (24.7%) and medical support (25.2%). A significant correlation was observed between EDSS and subjectively felt affectedness (p ≤ 0.01). Motor disorders explained differences in patient needs behind a higher EDSS score; higher severe affectedness referred to other issues like dependency and immobility.
Conclusions: EDSS is insufficient for usage as the sole instrument for measuring severe affectedness as it does not take into account other potential reasons. Complex patient needs necessitate multi-professional care as offered by palliative medicine.