1.
What is quality of life and how do we measure it? Relevance to Parkinson's disease and movement disorders
Martinez‐Martin, Pablo
Movement disorders,
March 2017, 2017-03-00, 20170301, Letnik:
32, Številka:
3
Journal Article
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ABSTRACT
Health‐related quality of life is a patient‐reported outcome that complements clinical evaluation and provides information about disease activity and effects of the treatment. The objective ...
of this review is to present the conceptual framework, the measures, and some of their most relevant applications in the field of Parkinson's disease and movement disorders. Health‐related quality of life is a subjective, individual, and multidimensional construct, and its main dimensions are physical, mental, and social, besides global perceptions of health and personal domains. Health‐related quality of life measurement is carried out by means of questionnaires or scales, ideally self‐applied by patients, and has a diversity of important applications for clinical practice, research, and health policy. Movement disorders and Parkinson's disease are complex conditions impacting all components of patients' health‐related quality of life. The use of health‐related quality of life tools provides important information on a variety of aspects that are important to patients while complementing clinical evaluations. In particular, studies using this kind of assessment can identify and monitor the most important health‐related quality of life determinant factors, allowing tailored assistance and prioritized interventions. In addition, maintaining or improving the patients' health‐related quality of life is an objective of care for chronic diseases and, therefore, it has to be monitored over time and as an outcome of clinical trials. Several methods are available for the interpretation of the change in scores of health‐related quality of life measures, although a definitive agreement on the most appropriate method is yet to be determined. Presently, health‐related quality of life assessment is an important outcome for research and management of chronic conditions such as Parkinson's disease and other movement disorders. © 2016 International Parkinson and Movement Disorder Society
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2.
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3.
The long‐term direct and indirect economic burden among Parkinson's disease caregivers in the United States
Martinez‐Martin, Pablo; Macaulay, Dendy; Jalundhwala, Yash J. ...
Movement disorders,
February 2019, Letnik:
34, Številka:
2
Journal Article
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ABSTRACT
Background
Parkinson's disease is a progressive, disabling neurodegenerative disorder associated with significant economic burden for patients and caregivers. The objective of this study was ...
to compare the direct and indirect economic burden of Parkinson's patients’ caregivers with demographically matched controls in the United States, in the 5 years after first diagnosis of Parkinson's disease.
Methods
Policyholders (18‐64 years old) linked to a Parkinson's disease patient (≥2 diagnoses of Parkinson's disease; first diagnosis is the index date) from January 1, 1998 to March 31, 2014, were selected from a private‐insurer claims database and categorized as Parkinson's caregivers. Eligible Parkinson's caregivers were matched 1:5 to policyholders with a non‐Parkinson's dependent (controls). Multivariable regression adjusted for baseline characteristics estimated direct costs (all‐cause insurer cost medical and prescription and comorbidity‐related medical costs; patient out‐of‐pocket costs) and indirect costs (disability and medically related absenteeism costs). Income progression was also compared between cohorts.
Results
A total of 1211 eligible Parkinson's caregivers (mean age, 56 years; 54% female) were matched to 6055 controls. In adjusted analyses, Parkinson's caregivers incurred significantly higher year 1 total all‐cause insurer costs ($8999 vs $7117) and medical costs ($7081 vs $5568) (both P < 0.01) and higher prescription costs (range for years 1‐5, $2506‐2573 vs $1405‐$1687) and total out‐of‐pocket costs ($1259‐1585 vs $902‐$1192) in years 1‐5 (all P < 0.01). Parkinson's caregivers had significantly higher adjusted indirect costs in years 1‐3 (range for years 1‐3, $2054‐$2464 vs $1681‐$1857; all P < 0.05) and higher cumulative income loss over 5 years ($5967 vs $2634 by year 5; P for interaction = 0.03).
Conclusions
Parkinson's caregivers exhibited higher direct and indirect costs and greater income loss compared with matched controls. © 2018 International Parkinson and Movement Disorder Society © 2018 The Authors. Movement Disorders published by Wiley Periodicals, Inc. on behalf of International Parkinson and Movement Disorder Society.
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4.
Global scales for cognitive screening in Parkinson's disease: Critique and recommendations
Skorvanek, Matej; Goldman, Jennifer G.; Jahanshahi, Marjan ...
Movement disorders,
February 2018, Letnik:
33, Številka:
2
Journal Article
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Background
Cognitive impairment is a common nonmotor manifestation of Parkinson's disease, with deficits ranging from mild cognitive difficulties in 1 or more of the cognitive domains to severe ...
dementia. The International Parkinson and Movement Disorder Society commissioned the assessment of the clinimetric properties of cognitive rating scales measuring global cognitive performance in PD to make recommendations regarding their use.
Methods
A systematic literature search was conducted to identify the scales used to assess global cognitive performance in PD, and the identified scales were reviewed and rated as “recommended,” “recommended with caveats,” “suggested,” or “listed” by the panel using previously established criteria.
Results
A total of 12 cognitive scales were included in this review. Three scales, the Montreal Cognitive Assessment, the Mattis Dementia Rating Scale Second Edition, and the Parkinson's Disease‐Cognitive Rating Scale, were classified as “recommended.” Two scales were classified as “recommended with caveats”: the Mini‐Mental Parkinson, because of limited coverage of executive abilities, and the Scales for Outcomes in Parkinson's Disease‐Cognition, which has limited data on sensitivity to change. Six other scales were classified as “suggested” and 1 scale as “listed.”
Conclusions
Because of the existence of “recommended” scales for assessment of global cognitive performance in PD, this task force suggests that the development of a new scale for this purpose is not needed at this time. However, global cognitive scales are not a substitute for comprehensive neuropsychological testing. © 2017 International Parkinson and Movement Disorder Society
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5.
The Non‐Motor Symptoms Scale in Parkinson’s disease: Validation and use
Acta neurologica Scandinavica,
January 2021, 2021-Jan, 2021-01-00, 20210101, 2021, Letnik:
143, Številka:
1
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The Non‐Motor Symptoms Scale (NMSS) was developed and validated in 2007 as the first instrument for the comprehensive assessment of a range of non‐motor symptoms in Parkinson's disease (PD). Thirteen
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6.
The movement disorder society nonmotor rating scale: Initial validation study
Chaudhuri, K. Ray; Schrag, Anette; Weintraub, Daniel ...
Movement disorders,
January 2020, Letnik:
35, Številka:
1
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Background
The Movement Disorder Society–sponsored Nonmotor Rating Scale is an update of the existing Parkinson's disease Nonmotor Symptoms Scale modified to address some limitations in Nonmotor ...
Symptoms Scale scoring, structure, and symptom coverage.
Methods
PD patients were recruited from movement disorder centers in an international, multicenter study. The Movement Disorder Society Nonmotor Rating Scale, consisting of 13 domains plus a subscale for nonmotor fluctuations, was rater administered, along with the Nonmotor Symptoms Scale and other clinical assessments. Standard reliability and validity testing were conducted.
Results
Four hundred and two PD patients were recruited (mean age ± standard deviation, 67.42 ± 9.96 years; mean age at PD onset ± standard deviation, 59.27 ± 10.67 years; median Hoehn and Yahr stage 2 (interquartile range 2–3). Data quality was satisfactory for all Movement Disorder Society Nonmotor Rating Scale domains except sexual (6.7% missing data). There were no floor or ceiling effects for the Movement Disorder Society Nonmotor Rating Scale and nonmotor fluctuations total score; domains had no ceiling effects, but some floor effects (13.5%–83.5%). The Movement Disorder Society Nonmotor Rating Scale and nonmotor fluctuations total score internal consistency were acceptable (average Cronbach's alpha, 0.66 and 0.84, respectively); interrater reliability was excellent (intraclass correlation coefficient, >0.95); for test‐retest reliability, the intraclass correlation coefficient was 0.84 for the Movement Disorder Society Nonmotor Rating Scale and 0.70 for Movement Disorder Society nonmotor fluctuations total score, and precision was excellent for the Movement Disorder Society Nonmotor Rating Scale (standard error of measurement, 25.30) and fair for nonmotor fluctuations (standard error of measurement, 7.06). Correlations between Movement Disorder Society Nonmotor Rating Scale score and the corresponding Nonmotor Symptoms Scale and Movement Disorder Society UPDRS scores were high. There were no significant sex or age effects. The Movement Disorder Society Nonmotor Rating Scale score increased with increasing PD duration, disease severity, and PD medication dose (all P < 0.001).
Conclusions
The Movement Disorder Society Nonmotor Rating Scale is a valid measure for measuring the burden of a wide range of Nonmotor Rating Scale scores, including nonmotor fluctuations, in PD patients. © 2019 International Parkinson and Movement Disorder Society
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7.
The Parkinson Anxiety Scale (PAS): Development and validation of a new anxiety scale
Leentjens, Albert F.G.; Dujardin, Kathy; Pontone, Gregory M. ...
Movement disorders,
July 2014, Letnik:
29, Številka:
8
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ABSTRACT
Existing anxiety rating scales have limited construct validity in patients with Parkinson's disease (PD). This study was undertaken to develop and validate a new anxiety rating scale, the ...
Parkinson Anxiety Scale (PAS), that would overcome the limitations of existing scales. The general structure of the PAS was based on the outcome of a Delphi procedure. Item selection was based on a canonical correlation analysis and a Rasch analysis of items of the Hamilton Anxiety Rating Scale (HARS) and the Beck Anxiety Inventory (BAI) from a previously published study. Validation was done in a cross‐sectional international multicenter study involving 362 patients with idiopathic PD. Patients underwent a single screening session in which the PAS was administered, along with the Hamilton Depression Rating Scale, the HARS, and the BAI. The Mini International Neuropsychiatric Interview was administered to establish Diagnostic and Statistical Manual of Mental Disorders (DSM) diagnoses of anxiety and depressive disorders. The PAS is a 12‐item observer or patient‐rated scale with three subscales, for persistent, episodic anxiety and avoidance behavior. Properties for acceptability and reliability met predetermined criteria. The convergent and known groups validity was good. The scale has a satisfactory factorial structure. The area under the receiver operating characteristics curve and Youden index of the PAS are higher than that of existing anxiety rating scales. The PAS is a reliable and valid anxiety measure for use in PD patients. It is easy and brief to administer, and has better clinimetric properties than existing anxiety rating scales. The sensitivity to change of the PAS remains to be assessed. © 2014 International Parkinson and Movement Disorder Society
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8.
Nonmotor symptoms evolution during 24 months of bilateral subthalamic stimulation in Parkinson's disease
Dafsari, Haidar S.; Silverdale, Monty; Strack, Marian ...
Movement disorders,
March 2018, 2018-03-00, 20180301, Letnik:
33, Številka:
3
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Background: The objective of this study was to investigate 24‐month of effects of bilateral subthalamic nucleus (STN) deep brain stimulation (DBS) on nonmotor symptoms in Parkinson's disease (PD).
...
Methods: In this prospective, observational, multicenter, international study including 67 PD patients undergoing bilateral STN‐DBS, we examined the Non‐motor Symptom Scale, Non‐Motor Symptoms Questionnaire, Parkinson's Disease Questionnaire‐8, Scales for Outcomes in Parkinson's Disease‐motor examination, ‐activities of daily living, and ‐complications, and levodopa‐equivalent daily dose preoperatively and at 5 and 24‐month of follow‐up. After checking distribution normality, longitudinal outcome changes were investigated with Friedman tests or repeated‐measures analysis of variance and Bonferroni correction for multiple comparisons using multiple tests. Post hoc, Wilcoxon signed rank t tests were computed to compare visits. The strength of clinical responses was analyzed using effect size. Explorative Spearman correlations of change scores from baseline to 24‐month follow‐up were calculated for all outcomes.
Results: The Non‐motor Symptom Scale and all other outcome parameters significantly improved from baseline to the 5‐month follow‐up. From 5 to 24‐month, partial decrements in these gains were found. Nonetheless, comparing baseline with 24‐month follow‐up, significant improvements were observed for the Non‐motor Symptom Scale (small effect), Scales for Outcomes in PD‐motor examination showed a moderate effect, and Scales for Outcomes in Parkinson's Disease‐complications and levodopa‐equivalent daily dose showed large effects. Non‐motor Symptom Scale change scores from baseline to 24‐month follow‐up correlated significantly with Parkinson's Disease Questionnaire‐8, Scales for Outcomes in Parkinson's Disease‐activities of daily living, and ‐motor complications change scores.
Conclusions: This study provides evidence of beneficial effects of bilateral STN‐DBS on nonmotor symptoms at 24‐month follow‐up. The extent of nonmotor symptom improvement was directly proportionate to improvements in quality of life, activities of daily living, and motor complications. This study underlines the importance of nonmotor symptoms for holistic assessments of DBS outcomes. © 2018 International Parkinson and Movement Disorder Society
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9.
Clinical subtypes of Parkinson's disease
van Rooden, Stephanie M.; Colas, Fabrice; Martínez-Martín, Pablo ...
Movement disorders,
January 2011, Letnik:
26, Številka:
1
Journal Article
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The clinical heterogeneity of Parkinson's disease (PD) may point at the existence of subtypes. Because subtypes likely reflect distinct underlying etiologies, their identification may facilitate ...
future genetic and pharmacotherapeutic studies. Aim of this study was to identify subtypes by a data‐driven approach applied to a broad spectrum of motor and nonmotor features of PD. Data of motor and nonmotor PD symptoms were collected in 802 patients in two different European prevalent cohorts. A model‐based cluster analysis was conducted on baseline data of 344 patients of a Dutch cohort (PROPARK). Reproducibility of these results was tested in data of the second annual assessment of the same cohort and validated in an independent Spanish cohort (ELEP) of 357 patients. The subtypes were subsequently characterized on clinical and demographic variables. Four similar PD subtypes were identified in two different populations and are largely characterized by differences in the severity of nondopaminergic features and motor complications: Subtype 1 was mildly affected in all domains, Subtype 2 was predominantly characterized by severe motor complications, Subtype 3 was affected mainly on nondopaminergic domains without prominent motor complications, while Subtype 4 was severely affected on all domains. The subtypes had largely similar mean disease durations (nonsignificant differences between three clusters) but showed considerable differences with respect to their association with demographic and clinical variables. In prevalent disease, PD subtypes are largely characterized by the severity of nondopaminergic features and motor complications and likely reflect complex interactions between disease mechanisms, treatment, aging, and gender. © 2010 Movement Disorder Society.
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10.
Levodopa Dose Equivalency in Parkinson's Disease: Updated Systematic Review and Proposals
Jost, Stefanie T.; Kaldenbach, Marie‐Ann; Antonini, Angelo ...
Movement disorders,
July 2023, Letnik:
38, Številka:
7
Journal Article
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Background
To compare drug regimens across clinical trials in Parkinson's disease (PD) conversion formulae between antiparkinsonian drugs have been developed. These are reported in relation to ...
levodopa as the benchmark drug in PD pharmacotherapy as ‘levodopa equivalent dose’ (LED). Currently, the LED conversion formulae proposed in 2010 by Tomlinson et al. based on a systematic review are predominantly used. However, new drugs with established and novel mechanisms of action and novel formulations of longstanding drugs have been developed since 2010. Therefore, consensus proposals for updated LED conversion formulae are needed.
Objectives
To update LED conversion formulae based on a systematic review.
Methods
The MEDLINE, CENTRAL, and Embase databases were searched from January 2010 to July 2021. Additionally, in a standardized process according to the GRADE grid method, consensus proposals were issued for drugs with scarce data on levodopa dose equivalency.
Results
The systematic database search yielded 3076 articles of which 682 were eligible for inclusion in the systematic review. Based on these data and the standardized consensus process, we present proposals for LED conversion formulae for a wide range of drugs that are currently available for the pharmacotherapy of PD or are expected to be introduced soon.
Conclusions
The LED conversion formulae issued in this Position Paper will serve as a research tool to compare the equivalence of antiparkinsonian medication across PD study cohorts and facilitate research on the clinical efficacy of pharmacological and surgical treatments as well as other non‐pharmacological interventions in PD. © 2023 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.
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