Data from: Long‐term follow‐up, quality of life and survival of Lambert‐Eaton myasthenic syndrome patients

Objective To study survival and characterize long-term functional impairments as well as health-related quality of life (HRQOL) of Lambert-Eaton myasthenic syndrome (LEMS) patients. Methods In this observational study, survival of LEMS patients, separately for non-tumor (NT) and small-cell lung cancer (SCLC), was compared to the Dutch general population and to patients with SCLC. Disease course in LEMS patients was recorded retrospectively. Several scales for functional impairments and health-related quality of life were assessed. Results We included 150 LEMS patients. Survival was similar to the general population in 65 NT-LEMS patients. Tumor survival was significantly longer in 81 SCLC-LEMS patients compared to non-LEMS SCLC patients (overall median survival 17 vs. 7.0 months, p<0.0001). At diagnosis, 39 patients (62%) of 63 patients with complete follow-up data were independent for ADL activities, improving to 85% at 1-year follow-up. Physical HRQOL composite score (55.9) was significantly lower than in the general population (76.3, p<0.0001) and comparable to myasthenia gravis (60.5) Mental HRQOL composite score was 71.8 in LEMS patients, comparable to the general population (77.9, p=0.19) and myasthenia gravis (70.3). Conclusions This study shows NT-LEMS patients have normal survival. SCLC-LEMS patients have an improved tumor survival, even after correcting for tumor stage. A majority of LEMS patients report a stable disease course and remain or become independent for self-care after treatment.