Real-world participation after spinal cord injury: longitudinal associations with return to work and long-term social integration.

Late stage Parkinson's disease (PD) constitutes the last years of the patient's life and is a time when the patient has an increased disease burden and there is an increased need of care from both informal family caregivers and the health and social care systems. Research efforts have been initiated over the past decade to increase focus on this severely affected patient group, which is often excluded in research. It has been shown that there is a high prevalence of motor impairment as well as non-motor symptoms (NMS) burden, which is associated with reduced quality of life (QoL) for both patients and their informal family caregivers. The results have further shown that treatment is often not optimized and could be improved, as therapeutic gains may be reached also in late stage PD. To have a movement disorder specialist as treating physician and to optimize treatment in the late stage may benefit the patient's symptomatology, as there is still a good levodopa effect in at least half of the patients. Palliative care models have been proposed as part of mapping and individualizing patients’ needs in the late stage, as well as for proactive advance care planning together with the patient for the late stage and end-of life related situations. It has been suggested that patients live about 4–5 years in the last disease stage and that hallucinations, regular falls, dementia and need for residential care have been indicated as milestones that occur during this period. Previous studies have shown a varying but increased mortality in PD compared to controls. Advancing age and dementia have been identified across previous studies as the factors most commonly associated with increased mortality. Knowledge on the most common causes of death and factors associated with higher mortality hazard may aid clinicians to better identify problem areas that can be monitored and addressed in order to improve the symptomatology and the overall situation for the late stage patient. Through the Care of Late Stage Parkinsonism (CLaSP) project, we have followed a Swedish cohort of 107 late stage PD patients prospectively during the past decade. The aim of the present study was to carry out a long-term assessment and follow-up of this late stage cohort, with focus on investigating mortality rate, main causes of death and factors associated with higher mortality hazard.