HRQoL measures
MG-related dysfunction, anxiety/depression
DISEASE
The MG-QOL15r and EQ-5D-5L used to assess HRQoL in the ADAPT study were administered at initiation of each TC, weekly (± 1 day) during each TC, weekly (± 1 day) for 4 weeks after completion of each TC, then every 2 weeks, for ≤ 26 weeks.The MG-QOL15r is a patient-reported disease-specific measure. The 15-item survey assesses patient perception of attributes associated with MG and emotional/psychological burden of MG, including extent of and dissatisfaction with MG-related dysfunction over the prior few weeks. Survey items are rated on a 3-point Likert scale of 0 to 2, where 0 is “not at all” and 2 is “very much.” There are 4 domains, with a differing number of items per domain: mobility (9 items), disease symptoms (3 items), general contentment (1 item), and emotional well-being (2 items). The 15 questions cover ocular, swallowing, and speech symptoms; proximal limb function and mobility; as well as personal grooming, social life and activities, disease fluctuations, and psychological health [The EQ-5D-5L instrument developed by the EuroQoL Group is a standardized measure of health status widely used across disease states for clinical and economic appraisal. Patient-reported scores indicate perceived difficulty on that day for aspects of health across 5 dimensions: mobility, self-care, usual activities, pain/discomfort, and anxiety/depression. The 5 levels range from no problem (1) to unable to/severe problems (5). Scoring results in a 5-digit code that corresponds to the patient’s rating for each domain; this unique 5-digit code thus describes the patient’s health state [The EQ-5D-5L also includes a VAS that indicates a patient’s perceived overall health status for that day. Patients indicate their overall health on a scale of 0 to 100 by marking an 