Introduction: Functional dependency in basic activities of daily living (ADLs) is a key outcome in Parkinson's disease (PD). We aimed to define dependency in PD, using the original and MDS versions of the Unified Parkinson's Disease Rating Scale (UPDRS). Methods: We developed two algorithms to define dependency from items of UPDRS Part 2 and MDS-UPDRS Part 2 relating to basic ADLs (feeding, dressing, hygiene and walking, and getting out of a chair). We validated both algorithms using data from 1110 patients from six community-based PD incidence cohorts, testing concurrent validity, convergent validity, and predictive validity. Results: Our optimal algorithm showed high specificity and moderate to high sensitivity versus Schwab & England < 80% (specificity 95% [95% confidence interval (CI) 93-97] and sensitivity 65% [95% CI 55-73] at baseline; 88% [95% CI 85-91] and 85% [95% CI 79-97] respectively at five-years follow-up). Convergent validity was demonstrated by strong associations between dependency defined by the algorithm and cognition (MMSE), quality of life (PDQ39), and impairment (UPDRS part 3) (all p < 0.001). Algorithm-defined dependency status also predicted mortality: HR for mortality in those dependent vs independent at baseline was 1.6 (95%CI 1.2-2.1) and in those dependent vs independent at five-years' follow-up was 2.2 (1.6-3.0). Discussion: We have demonstrated the concurrent validity, convergent validity, and predictive validity of a UPDRS-OS-UPDRS-based algorithm to define functional dependency in PD. This can be used for studying dependency in any study where UPDRS or MDS-UPDRS part 2 data have been collected.

Background There are few prognostic data from community-based incident cohorts of people with Parkinson9s disease (PD) or atypical parkinsonism. Methods An incident cohort of people with degenerative or vascular parkinsonism and age-gender matched controls were followed up annually from diagnosis until death. Participants are seen yearly to gather data on multiple outcomes including survival, disability (dependency on others for activities of daily living) and institutionalisation. Research criteria are used to guide the clinical diagnosis. We analysed all-cause mortality, disability and institutionalisation by different diagnostic categories using survival analysis. Results 361/377 (96%) incident patients (203 PD, 43 DLB, 43 Parkinson9s plus, 39 vascular, 33 other; mean age at diagnosis 75 yrs) and 262 controls (mean age 75yrs) were followed up for a median of 5.5yrs. Mortality was higher in patients than controls (adjusted hazards ratio 2.01 for PD, 95% CI 1.30–3.12), especially for atypical parkinsonism (median survival PD 92 months, other disorders 25–39 months). At three years the rates of death or dependency were: controls 21%, PD 47%, atypical parkinsonism 95% whilst institutionalisation rates were: controls 2.5%, PD 7.5%, atypical parkinsonism 31–68%. Conclusion Incident parkinsonian patients, particularly those with atypical parkinsonism, have significantly higher rates of death, dependency and institutionalisation than controls.

Introduction: There have been few incidence studies of vascular parkinsonism (VP), progressive supranuclear palsy (PSP), and parkinsonian-type multiple system atrophy (MSA-P). We measured the age-, gender- and socioeconomic-specific incidence rates for these conditions in north-east Scotland.Methods: Incident non drug-induced parkinsonian patients were identified prospectively over three years by several overlapping methods from a baseline primary care population of 311,357. Parkinsonism was diagnosed if patients had two or more cardinal motor signs. Patients had yearly follow-up to improve diagnostic accuracy.Incidence rates using the diagnosis by established research criteria at latest follow-up were calculated for each condition by age, gender, and socioeconomic status.Results: Of 377 patients identified at baseline with possible or probable parkinsonism, 363 were confirmed as incident patients after median follow-up of 26 months (mean age 74.8 years, SD 9.8; 61% men). The crude annual incidence was 3.2 per 100,000 (95% confidence interval (CI) 2.2-4.3) for VP, 1.7 per 100,000 (95% CI 1.0-2.4) for PSP, and 1.4 per 100,000 (95% CI 0.8-2.1) for MSA-R VP and MSA-P were more common in men (age-adjusted male to female ratios 2.58 (95% CI 1.65-3.83) and 8.65 (95% CI 4.73 -14.5) respectively). Incidence did not vary with socioeconomic status.Discussion: This is the first community-based, prospective study to report the incidence of vascular parkinsonism and the third to report the incidence of PSP and MSA-R Further follow-up and comparison with similar studies in different populations will yield valuable prognostic and aetiological information on these conditions. (C) 2014 Elsevier Ltd. All rights reserved.

BACKGROUNDCognitive decline is common in Parkinson's disease (PD) but may not be adequately identified by the mini-mental state examination (MMSE), which is better suited to Alzheimer's disease. The mini-mental Parkinson (MMP) examination is a cognitive screening tool designed in French specifically for PD. We aimed to establish the validity and reliability of the English language version of the MMP compared with the MMSE.METHODSPeople with various stages of PD underwent testing with the MMP and MMSE, which was then compared with a reference standard battery of neuropsychological tests to identify those with significant cognitive impairment.RESULTSForty-nine patients were recruited. Both the MMP and MMSE were significantly correlated with scores on all the neuropsychological tests in the validation battery. The median MMP score was proportionally lower (80% of maximum) than the MMSE (90% of maximum) in PD patients with cognitive impairment and those with prior neuropsychiatric complications but there was no difference between the MMP and MMSE in areas under the curves (0.84) for detecting cognitive impairment. Test-retest reliability of the MMP was good (intra-class correlation coefficient 0.793). An MMP of 28 or lower out of 32 detected cognitive impairment with 87% sensitivity and 76% specificity.DISCUSSIONThe English language version of the MMP has now been validated. It detects more cognitive deficits in PD patients than the MMSE and identifies significant cognitive impairment in those with PD at least as well as the MMSE.

There have been few high quality incidence studies of Parkinson's disease (PD). We measured age-, gender- and socioeconomic-specific incidence rates for parkinsonism and PD in north-east Scotland, and compared our results with those of previous high quality studies. Incident patients were identified prospectively over three years by several overlapping methods from primary care practices (total population 311,357). Parkinsonism was diagnosed if patients had two or more cardinal motor signs. Drug-induced parkinsonism was excluded. Patients had yearly follow-up to improve diagnostic accuracy. Incidence rates using clinical diagnosis at latest follow-up were calculated for all parkinsonism and for PD by age, gender and socioeconomic status. Meta-analysis with similar studies was performed. Of 377 patients identified at baseline with possible or probable parkinsonism, 363 were confirmed as incident patients after median follow-up of 26 months (mean age 74.8 years, SD 9.8; 61% men). The crude annual incidence of parkinsonism was 28.7 per 100,000 (95% confidence interval (CI) 25.7-31.8) and PD 17.9 per 100,000 (95% CI 15.5-20.4). PD was more common in men (age-adjusted male to female ratio 1.87:1, 95% CI 1.55-2.23) but there was no difference by socioeconomic status. Meta-analysis of 12 studies showed an incidence of PD (adjusted to the 1990 Scottish population) of 14.6 per 100,000 (95% CI 12.2-17.3) with considerable heterogeneity (I(2) 95%), partially explained by population size and recruitment duration. The incidence of PD was similar to other high quality studies. The incidence of PD was not affected by socioeconomic status.

Aim To describe factors people consider important in deciding whether or not to donate their brain for research after death. Background Brain tissue retrieved at post-mortem is needed to further research into neurological conditions such as Parkinson's disease. Previous research has focussed mainly on attitudes to organ donation for transplantation. Design Data were gathered and analysed using a qualitative approach based on grounded theory. Methods Nineteen people who had made a decision about brain donation, five people with Parkinson's and 14 unaffected individuals, were identified through theoretical sampling. Interviews conducted between September 2007January 2008 were analysed to identify themes representing the concerns of participants, when making a decision. Findings The three main themes identified were views and beliefs about post-mortem, the importance of family and the things people do not talk about. Although participants were more familiar with the concept of organ donation for transplantation, unanimous support was expressed for brain donation for research. However, beliefs about death and post-mortem, influence of family and the difficulty in talking and thinking about things to do with death all posed barriers to consent when actually asked to make a decision. For some, however, being asked had acted as a catalyst, transforming previously held positive attitudes into a decision to consent. Conclusion Guidelines for asking developed from these findings highlight the importance of discussing the issue to raise awareness in potential donors, involving family members, and giving accurate and appropriate information to inform, reassure and to dispel misconceptions.

Background: The issue of whether to adopt a '' wait and watch '' strategy or to initiate drug therapy soon after diagnosis in Parkinson's disease (PD) has been the subject of some debate. A recent observational study supported early treatment by demonstrating deterioration in self-reported health status in those left untreated, but not those who received therapy. We aimed to replicate this observation.Methods: People with PD from a prospective incidence study underwent follow-up with yearly clinical assessment of parkinsonian impairment (Unified Parkinson's Disease Rating Scale (UPDRS)) and self-reported health status (Parkinson's Disease Questionnaire (PDQ-39)). Two year outcomes were compared with those who started treatment within 1 year of diagnosis and those left untreated.Results: 42 patients with PD were followed-up for 2 years, of whom 26 started treatment during the first year and 16 remained untreated. Those receiving treatment had significantly higher UPDRS and PDQ-39 scores at baseline. There was no significant deterioration in PDQ-39 score in either group (median change untreated 0.8 vs treated 4.0; p= 0.47), despite a significant difference in the change in motor UPDRS scores (untreated 6.0 vs treated 26.0; p= 0.03).Conclusion: Given the lack of significant deterioration in the PDQ-39 in untreated patients, we believe a '' wait and watch '' strategy for the treatment of newly diagnosed PD remains a credible approach unless randomised trials prove otherwise.

Objective: During a prospective community-based incidence study of parkinsonism, a control group was recruited for comparison with the incident patients. This study compared the demographic and health status of recruited vs. nonrecruited controls.Study Design and Setting: For each incident patient. attempts were made to recruit an age-gender matched control from the same general practice or, failing that, from a previously identified community cohort of people aged over 64 years who had expressed an interest in taking part in future research. Recruited controls were compared with those who were approached but not recruited in terms of age, socioeconomic status, gender. several measures of health status, and survival.Results: A total of 74 controls (40%) were recruited Out Of 186 potential controls who were approached. Recruited controls scored slightly worse than nonrecruited controls on every measure of health status. which reached statistical significance for numbers of acute prescriptions and major surgical procedures. There were no significant differences in age, gender, socioeconomic status. or survival.Conclusion: The control cohort was affected by recruitment bias, which suggested that recruited controls had slightly poorer health compared to nonrecruited controls. This bias may reduce differences in health when comparisons are made between the controls and the parkinsonian patients. (c) 2008 Elsevier Inc. All rights reserved.

Background: Accurate diagnosis of the cause of parkinsonism during life can be difficult, particularly at presentation, but few studies have described changes in clinical diagnosis over time and the effect of applying strict research criteria. Methods: Incident patients with a possible/probable diagnosis of degenerative or vascular parkinsonism had a standardised assessment at diagnosis and at yearly intervals thereafter at which the most likely clinical diagnosis was recorded without strict application of research criteria. Four years after the beginning of the incident period, formal research criteria were applied retrospectively using patient records at baseline and the latest yearly follow-up. Results: Of 82 incident patients, 66 underwent at least 1 year of follow-up. After a median follow-up of 29 months, clinical diagnosis had changed in 22 (33%). Most (82%) changes occurred in the first year and were due to the development of atypical clinical features, particularly early cognitive impairment; the results of brain imaging; responsiveness to levodopa; and the rate of disease progression. Diagnosis on research criteria differed from latest clinical diagnosis in eight participants (12%). Research criteria gave a “probable” diagnosis in 71% of parkinsonian patients at follow-up but in only 15% at the initial assessment. Discussion: The clinical diagnosis of the cause of parkinsonism at presentation was often incorrect, even when made by those with a special interest. In particular, Parkinson’s disease was overdiagnosed. Research criteria were often unhelpful in clarifying the diagnosis, even after a median of 29 months of follow-up. Further research is required to identify factors that may be used to improve the accuracy of diagnosis at initial assessment.

Objective: To assess the effect of the colors of the envelope and ink on the response rate to a postal questionnaire in a study screening for undiagnosed parkinsonism in people aged 65 years and over in the community.Study Design and Setting: A total of 2,524 people aged 65 years and over from five general practices in Aberdeen were randomized to receive a questionnaire about the symptoms of parkinsonism printed in either colored (green) or black ink, and sent out in either a brown or white envelope.Results: The overall response rate was 63.5%. There was no significant interaction between envelope and ink color. The use of green ink compared to black significantly increased the response rate from 61.4% to 65.7% (OR 1.20, 95% confidence interval 1.02, 1.41). There was no overall effect of envelope color on response rate (62.3% brown and 64.8% white, OR 0.90, 95% confidence interval 0.76, 1.06) but there was significant heterogeneity between the general practices. When this general practice-envelope interaction was accounted for, brown envelopes had a significantly lower response rate than white ones (OR 0.49).Conclusion: This study, along with existing evidence, has shown that the use of certain ink colors in postal questionnaires is likely to increase response rates relative to black ink. The effect of envelope color was inconsistent both within this study and between previous studies. (C) 2006 Elsevier Inc. All rights reserved.

The objective of this study was to test the methods for a large study of the incidence and prognosis of Parkinson's disease and other degenerative parkinsonian disorders and provide provisional incidence figures. This was a community-based prospective study to identify patients with newly diagnosed non-drug-induced Parkinsonism (>or=2 of tremor, rigidity, bradykinesia, postural instability) from a population of 148,600 people in Aberdeen, Scotland, over 18 months. Multiple search strategies were used to identify patients, including some population screening. Incident patients and age/sex-matched controls had assessments of impairment, disability, quality of life, mood, and cognition and are being followed up yearly. Two hundred and two people with possible parkinsonian symptoms were assessed, and 82 incident patients were identified, 50 with probable Parkinson's disease. The crude incidences of probable Parkinsonism and probable Parkinson's disease were 31.4/100,000/year (95% CI: 24.5-39.7) and 22.4/100,000/year (95% CI: 16.6-29.6), respectively. The mean age of diagnosis of Parkinson's disease was 76.1 +/- 10.0 years and the incidence was greater in men. The methods were generally successful. Provisionally, we found a higher incidence of Parkinson's disease than other comparable studies, and our patients were considerably older. This may reflect better case ascertainment in the elderly. A larger study is planned.

Movement DisordersVolume 19, Issue 9 p. 1116-1116 Letter to the Editors Maximizing patient consent for video recording Kate S.M. Taylor, Corresponding Author Kate S.M. Taylor [email protected] Department of Medicine and Therapeutics, University of Aberdeen, Aberdeen, United KingdomDepartment of Medicine and Therapeutics, University of Aberdeen, Aberdeen, United KingdomSearch for more papers by this authorCarl E. Counsell, Carl E. Counsell Department of Medicine and Therapeutics, University of Aberdeen, Aberdeen, United KingdomSearch for more papers by this authorJoanna C. Gordon, Joanna C. Gordon Department of Medicine and Therapeutics, University of Aberdeen, Aberdeen, United KingdomSearch for more papers by this authorClare E. Harris, Clare E. Harris Department of Medicine and Therapeutics, University of Aberdeen, Aberdeen, United KingdomSearch for more papers by this author Kate S.M. Taylor, Corresponding Author Kate S.M. Taylor [email protected] Department of Medicine and Therapeutics, University of Aberdeen, Aberdeen, United KingdomDepartment of Medicine and Therapeutics, University of Aberdeen, Aberdeen, United KingdomSearch for more papers by this authorCarl E. Counsell, Carl E. Counsell Department of Medicine and Therapeutics, University of Aberdeen, Aberdeen, United KingdomSearch for more papers by this authorJoanna C. Gordon, Joanna C. Gordon Department of Medicine and Therapeutics, University of Aberdeen, Aberdeen, United KingdomSearch for more papers by this authorClare E. Harris, Clare E. Harris Department of Medicine and Therapeutics, University of Aberdeen, Aberdeen, United KingdomSearch for more papers by this author First published: 30 August 2004 https://doi.org/10.1002/mds.20215Citations: 1Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onEmailFacebookTwitterLinkedInRedditWechat No abstract is available for this article.Citing Literature Volume19, Issue9September 2004Pages 1116-1116 RelatedInformation