Health-related quality of life in patients with longstanding ‘benign multiple sclerosis’

• Relatively little is known about health-related quality of life (HRQoL) in so called ‘benign’ MS.
• We accessed a unique cohort of 61 individuals with a history of longstanding ‘benign MS’.
• Patients scored highly for emotional wellbeing; low for energy and physical role limitations.
• Lower physical or mental HRQoL was associated with worsening fatigue and depression.
• EDSS progression was associated with the physical, but not mental aspects of HRQoL.

BackgroundWe explored health-related quality of life (HRQoL) and psychosocial aspects in a cohort of patients with a history of longstanding benign MS (BMS).MethodsPatients with BMS (EDSS≤3 after 20 years disease duration) were re-assessed 25–30 years post-MS symptom onset for: EDSS, HRQoL (MSQoL-54), depression (Beck Depression Inventory-II), and fatigue (Modified Fatigue Impact Scale). Associations between these measures and patient characteristics (age, disease duration, ‘benign status’ [remained benign (EDSS≤3) vs no longer benign (EDSS>3)]) were examined.ResultsOf the 61 patients included, 36 (49%) remained benign and 25 (41%) progressed (EDSS>3). Overall, physical and mental HRQoL scores were positively associated with each other (r=0.63; p<0.0001) and both negatively correlated with fatigue (r=−0.76 and −0.44, respectively; p<0.0005) and depression (r=−0.55 and −0.77; p<0.0001). Patients who remained benign reported better physical HRQoL vs those no longer benign (mean (SD)=67.3±18.1 vs 50.7±19.9, p=0.001), but not mental health (mean (SD)=67.4±19.3 vs 65.0±20.6, p=0.639). Generally, neither age nor disease duration was strongly associated with HRQoL (r<0.35).ConclusionLower self-reported physical or mental HRQoL was associated with worsening fatigue and depression. However, EDSS progression was associated with the physical, but not mental aspects of HRQoL. Patient-reported HRQoL in ‘benign MS’ provides insight on the impact of MS beyond EDSS alone.