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.