Dementia and severity of parkinsonism determines the handicap of patients in late-stage Parkinson's disease: the Barcelona-Lisbon cohort

Background and purposeHandicap has not been explored as a patient-centred outcome measure in Parkinson's disease (PD). The clinical features and medication use in late stages of PD (LS-PD) were reported previously. MethodsHandicap, medical conditions, use of healthcare resources and the impact of LS-PD upon caregivers were characterized in a cross-sectional study of LS-PD stages 4 or 5 of Hoehn and Yahr (H&Y). Handicap was measured using the London Handicap Scale (LHS: 0,maximal handicap; 1,no handicap). ResultsThe mean LHS score in 50 patients was 0.33 (SD0.15). The presence of dementia, the Unified Parkinson's Disease Rating Scale part I score and the H&Y stage in off' independently predicted the LHS score (adjusted R-2=0.62; P=0.000). Comorbidities and past medical conditions were frequent. Thirty-five patients lived at their house. Forty-five received unpaid care. Mean visits to the family doctor in the preceding 6months were 2.2 (SD +/- 3.0) and to a neurologist 1.7 (SD +/- 1.0). Use of other health resources was low. Unpaid caregivers spent much time with patients and reported a high burden. ConclusionHandicap could be measured in LS-PD and the LHS was easily completed by patients and caregivers. The high handicap in our cohort was mostly driven by the presence of dementia, behavioural complaints and the severity of non-dopaminergic motor features. Patients visited doctors infrequently and made low use of health resources, whilst unpaid caregivers reported a high burden.