title: Dementia and severity of parkinsonism determines the handicap of patients in late-stage Parkinson's disease: the Barcelona-Lisbon cohort.
abstract: OBJECTIVE
  Handicap 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.
  
  
  METHODS
  Handicap, 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).
  
  
  RESULTS
  The mean LHS score in 50 patients was 0.33 (SD ±0.15). 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 6 months 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.
  
  
  CONCLUSIONS
  Handicap 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.
authors.affiliation: Neurology Service, Department of Neurosciences, Hospital Santa Maria, Lisbon, Portugal; Clinical Pharmacology Unit, Instituto de Medicina Molecular, Lisbon, Portugal.
authors.forename: M
authors.initials: M
authors.lastname: Coelho
authors.forename: M J
authors.initials: MJ
authors.lastname: Marti
authors.forename: C
authors.initials: C
authors.lastname: Sampaio
authors.forename: J J
authors.initials: JJ
authors.lastname: Ferreira
authors.forename: F
authors.initials: F
authors.lastname: Valldeoriola
authors.forename: M M
authors.initials: MM
authors.lastname: Rosa
authors.forename: E
authors.initials: E
authors.lastname: Tolosa
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D003704:Dementia / Q000209:etiology / Q000503:physiopathology*; D004185:Disability Evaluation; D006233:Persons with Disabilities; D018450:Disease Progression; D005260:Female; D006801:Humans; D008297:Male; D010300:Parkinson Disease / Q000150:complications / Q000503:physiopathology*; D011174:Portugal; D012720:Severity of Illness Index; D013030:Spain
keywords: Parkinson's disease; advanced; caregiver; dementia; disability; handicap; late stage; quality of life