Aim: This study sought to assess symptom severity and prevalence in people severely affected by multiple sclerosis (MS).
Methods: We collected data on symptoms and problems of patients as self-reported to trained interviewers on standardized questionnaires (including the Palliative Outcome Scale MS symptom checklist, POS-MSS).
Results: 52 patients were included, mean age 53 years; 26 had secondary progressive MS, 23 had primary progressive MS, three had other forms; 32/52 were unable to walk independently. Patients reported a mean of nine (median = 8.5, mode = 12) symptoms. Six symptoms affected more than 50% of patients: problems using legs, problems using arms, fatigue/lack of energy, spasms, pain, and feeling sleepy. Higher levels of disability were correlated with greater symptom severity for nine symptoms (Spearman rho ranged 0.28-0.56, p < 0.05).
Conclusion: Many symptoms in people severely affected by MS are as highly prevalent and severe as those experienced by patients with advanced cancer. Increased disability is associated with increased severity for some symptoms.