OBJECTIVES

Myasthenia gravis (MG) is a neuromuscular disorder causing weakness in arms, legs, double vision, and problems with speech, eating and breathing. This study sets out to report how MG affects patients’ health-related quality-of-life (HRQoL) in a real-world setting.

METHODS

A digital, prospective, observational, longitudinal study collected data using a smartphone/tablet application among 840 MG patients in Belgium, Canada, Germany, Italy, Japan, Spain, UK and USA. At baseline, patients filled in demographic, disease-related (MG Foundation of America score: MGFA), clinical (MG-Activities of Daily Living: MG-ADL, MG-Quality of life: MG-QoL, Hospital Anxiety and Depression: HADS), caregiver and HRQoL data (EQ-5D-5L).

RESULTS

617 MG patients (70% female, mean age 47 (IQR 36-58)) completed the EQ-5D-5L at baseline. The mean utility was 0.688 (IQR 0.599-0.837)), compared to 0.855 in the general population of the same age and gender. Age and gender had no noteworthy impact on utilities. In univariable analyses, utility was significantly associated with disease severity: for MGFA classes 1-5 utilities were respectively: 0.811, 0.766, 0.648, 0.527, 0.360 (p=<.0001). Highly significant negative associations were found with MG-ADL and MG-QoL total scores: a 1-point worsening in these scores corresponded with a utility decline of 0.0375 and 0.0207, respectively (both p=<.0001). The impact of mild, moderate and severe depression was associated with dis-utilities of -0.121, -0.230 and -0.408 (p=<.0001), and for mild, moderate and severe anxiety dis-utilities were -0.078, -0.147 and -0.252 (p=<.0001). Needing help from a caregiver generated a disutility of -0.236, and this was significantly associated with the number of hours of help received. A significant worsening in utility values was also found for patients with additional co-morbidities (-0.105, p=<0.0001).

CONCLUSIONS

MG patients have impaired HRQoL. The severity of the disease, the activities of daily living, their physical and mental health, and the necessity for a caregiver all significantly affect patients’ HRQoL.