Dementia and severity of parkinsonism determines the handicap of patients in late-stage Parkinson's disease: the Barcelona−Lisbon cohort
M. Coelho
Neurology Service, Department of Neurosciences, Hospital Santa Maria, Lisbon, Portugal
Clinical Pharmacology Unit, Instituto de Medicina Molecular, Lisbon, Portugal
Search for more papers by this authorCorresponding Author
M. J. Marti
Movement Disorders Unit, Neurology Service, Hospital Clinic, University of Barcelona, Centro de Investigacion en Red de Enfermedades Neurodegenerativas (CIBERNED), Barcelona, Spain
Correspondence: M. J. Martí, Movement Disorders Unit, Neurology Service, Hospital Clinic, University of Barcelona, Centro de Investigacion en Red de Enfermedades Neurodegenerativas (CIBERNED), Villaroel 170, 08036 Barcelona, Spain (tel.: +34 932 275785; fax: +34 932 275783; e-mail: [email protected]).Search for more papers by this authorC. Sampaio
Clinical Pharmacology Unit, Instituto de Medicina Molecular, Lisbon, Portugal
Laboratory of Clinical Pharmacology and Therapeutics, Faculty of Medicine, University of Lisbon, Lisbon, Portugal
Search for more papers by this authorJ. J. Ferreira
Neurology Service, Department of Neurosciences, Hospital Santa Maria, Lisbon, Portugal
Clinical Pharmacology Unit, Instituto de Medicina Molecular, Lisbon, Portugal
Laboratory of Clinical Pharmacology and Therapeutics, Faculty of Medicine, University of Lisbon, Lisbon, Portugal
Search for more papers by this authorF. Valldeoriola
Movement Disorders Unit, Neurology Service, Hospital Clinic, University of Barcelona, Centro de Investigacion en Red de Enfermedades Neurodegenerativas (CIBERNED), Barcelona, Spain
Search for more papers by this authorM. M. Rosa
Neurology Service, Department of Neurosciences, Hospital Santa Maria, Lisbon, Portugal
Clinical Pharmacology Unit, Instituto de Medicina Molecular, Lisbon, Portugal
Laboratory of Clinical Pharmacology and Therapeutics, Faculty of Medicine, University of Lisbon, Lisbon, Portugal
Search for more papers by this authorE. Tolosa
Movement Disorders Unit, Neurology Service, Hospital Clinic, University of Barcelona, Centro de Investigacion en Red de Enfermedades Neurodegenerativas (CIBERNED), Barcelona, Spain
Search for more papers by this authorM. Coelho
Neurology Service, Department of Neurosciences, Hospital Santa Maria, Lisbon, Portugal
Clinical Pharmacology Unit, Instituto de Medicina Molecular, Lisbon, Portugal
Search for more papers by this authorCorresponding Author
M. J. Marti
Movement Disorders Unit, Neurology Service, Hospital Clinic, University of Barcelona, Centro de Investigacion en Red de Enfermedades Neurodegenerativas (CIBERNED), Barcelona, Spain
Correspondence: M. J. Martí, Movement Disorders Unit, Neurology Service, Hospital Clinic, University of Barcelona, Centro de Investigacion en Red de Enfermedades Neurodegenerativas (CIBERNED), Villaroel 170, 08036 Barcelona, Spain (tel.: +34 932 275785; fax: +34 932 275783; e-mail: [email protected]).Search for more papers by this authorC. Sampaio
Clinical Pharmacology Unit, Instituto de Medicina Molecular, Lisbon, Portugal
Laboratory of Clinical Pharmacology and Therapeutics, Faculty of Medicine, University of Lisbon, Lisbon, Portugal
Search for more papers by this authorJ. J. Ferreira
Neurology Service, Department of Neurosciences, Hospital Santa Maria, Lisbon, Portugal
Clinical Pharmacology Unit, Instituto de Medicina Molecular, Lisbon, Portugal
Laboratory of Clinical Pharmacology and Therapeutics, Faculty of Medicine, University of Lisbon, Lisbon, Portugal
Search for more papers by this authorF. Valldeoriola
Movement Disorders Unit, Neurology Service, Hospital Clinic, University of Barcelona, Centro de Investigacion en Red de Enfermedades Neurodegenerativas (CIBERNED), Barcelona, Spain
Search for more papers by this authorM. M. Rosa
Neurology Service, Department of Neurosciences, Hospital Santa Maria, Lisbon, Portugal
Clinical Pharmacology Unit, Instituto de Medicina Molecular, Lisbon, Portugal
Laboratory of Clinical Pharmacology and Therapeutics, Faculty of Medicine, University of Lisbon, Lisbon, Portugal
Search for more papers by this authorE. Tolosa
Movement Disorders Unit, Neurology Service, Hospital Clinic, University of Barcelona, Centro de Investigacion en Red de Enfermedades Neurodegenerativas (CIBERNED), Barcelona, Spain
Search for more papers by this authorAbstract
Background and purpose
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 R2 = 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.
Conclusion
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.
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