Examining changing working status and caregiver assistance in amyotrophic lateral sclerosis (ALS) using large-scale European databases as part of PRECISION-ALS

Objective: To examine the working status of people living with ALS (plwALS), the identity of their caregivers, the amount of informal care provided to them, and how these factors change over time. Methods: Data from nine specialist European ALS centers and previously funded projects, such as ALSCarE, were collated. The cohort was stratified into progression groups based on the calculated ΔFRS and compared longitudinally. Results: Twenty-one thousand eight hundred and twenty patients were identified at the time of data analysis. One thousand one hundred and eighty-four had working status data. Two hundred and thirty-seven patients in this group were followed in the form of semi-structured interviews. Within the 1184 patient group, 45% were identified as in “paid employment” prior to diagnosis, taking a median of 12 months to leave the workforce post-onset. Eighty-three percent of patients were no longer working 20 months post-diagnosis. Informal care hours increased over time, and were primarily provided by spouses and children. In those less than 12 months from symptom onset, the median number of care hours per week was 15.0 (IQR 63.8), rising to 60.0 (IQR 154.0) 48–96 months after onset. There was a significant relationship between ALSFRS-R total score and hours of care delivered (r = −0.47, p < 0.001). Conclusion: Up to 45% of plwALS are working prior to diagnosis and their working status changes rapidly, taking an average of 12 months to leave the workforce. Caregiver input increases over time, proportional to ALSFRS-R score. Caregivers are primarily spouses and children. Further work is needed to comprehensively capture this information and calculate its true socioeconomic impact.