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
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.
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
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
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 hidden sister of motor fluctuations in Parkinson's disease: A review on nonmotor fluctuations
Martínez-Fernández, Raul; Schmitt, Emmanuelle; Martinez-Martin, Pablo ...
Movement disorders,
08/2016, Letnik:
31, Številka:
8
Journal Article
ABSTRACT
Only a few years after the introduction of levodopa, the first descriptions of motor fluctuations and dyskinesia related to dopaminergic therapy appeared. In PD, attention turned to their ...
management, that had dampened the euphoria of the “levodopa miracle.” It soon became clear that neuropsychiatric, autonomic, and sensory features also tend to develop fluctuations after chronic exposure to l‐dopa. The diversity of fluctuating nonmotor symptoms, their largely subjective nature, coupled with a frequent lack of insight led to difficulties in identification and quantification. This may explain why, despite the high impact of nonmotor symptoms on patient autonomy and quality of life, evaluation of nonmotor fluctuations is not part of clinical routine. In view of the lack of specific validated assessment tools, detailed anamnesis should ideally be coupled with an evaluation in both ON and OFF drug conditions. The mechanisms of nonmotor fluctuations are not well understood. It is thought that they share dopaminergic presynaptic pharmacokinetic and postsynaptic pharmacodynamic mechanisms with the classical motor complications, but involve different neural pathways. Although symptoms fluctuate with dopaminergic treatment, serotonine and norepinephrine denervation, as well as interactions between neurotransmitter systems, probably contribute to their diversity. The lack of validated tools for assessment of these phenomena explains the almost complete absence of treatment studies. Management, largely resulting from expert opinion, includes psychiatric follow‐up, nondopaminergic drugs, and advanced dopaminergic treatment, including drug delivery pumps and DBS. This review aims to provide a starting point for the understanding, diagnosis, and management of nonmotor fluctuations. © 2016 International Parkinson and Movement Disorder Society
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6.
The Non‐Motor Symptoms Scale in Parkinson’s disease: Validation and use
van Wamelen, Daniel J.; Martinez‐Martin, Pablo; Weintraub, Daniel ...
Acta neurologica Scandinavica,
January 2021, 2021-Jan, 2021-01-00, 20210101, 2021, Letnik:
143, Številka:
1
Journal Article
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 ...
years have elapsed since its introduction and extensive international validation with good psychometric attributes has been carried out. Here, we review the validation data of the NMSS and its cross‐validity with other scales, and describe the key evidence derived from use of the NMSS in clinical studies. To date, over 100 clinical studies and trials have made use of it as an outcome measure, showing consistent and strong correlations between NMSS burden and health‐related quality of life measures. Moreover, the scale has shown to be capable of detecting longitudinal changes in non‐motor symptoms, where studies have shown differential changes over time of several of the NMSS domains. The scale has become a key outcome in several randomized clinical trials. Highlighting the prevalence and importance of non‐motor symptoms to quality of life in patients with PD, the development of NMSS has also been useful in signposting clinical and biomarker based research addressing non‐motor symptoms in PD.
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7.
The impact of non-motor symptoms on health-related quality of life of patients with Parkinson's disease
Martinez-Martin, Pablo; Rodriguez-Blazquez, Carmen; Kurtis, Monica M. ...
Movement disorders,
15 February 2011, Letnik:
26, Številka:
3
Journal Article
Background:
Non‐motor symptoms are detrimental to health‐related quality of life (HRQoL) of Parkinson's disease patients. In this study, the Non‐Motor Symptoms Scale (NMSS) was used to assess the ...
impact of the non‐motor symptoms on HRQoL of Parkinson's disease patients.
Methods:
In a multicenter, international, cross sectional study on 411 Parkinson's disease patients, the NMSS was applied along with clinical (Hoehn and Yahr staging and SCOPA‐Motor) and HRQoL measures (PDQ‐39, and EQ‐5D). Prevalence of non‐motor symptoms was determined also through the NMSS. The association of NMSS and SCOPA‐Motor with HRQoL measures and the differences in HRQoL scores between patients with and without non‐motor symptoms in each NMSS domain were estimated by non‐parametric statistics. Predictors of HRQoL were sought through multiple linear regression analyses.
Results:
Nocturia (68.4% of the sample), fatigue (65.9%), and dribbling saliva (56.7%), were the most frequent complaints. Total NMSS score: (1) showed a higher correlation coefficient (rS = 0.70) with the PDQ‐39 Summary Index (SI) than SCOPA‐Motor (rS = 0.58); (2) showed high‐moderate correlation (rS = 0.60 − 0.38) with all PDQ‐39 domains; and (3) was the best predictor of HRQoL as measured by the PDQ‐39 SI. For each NMSS domain, patients with symptoms had significantly worse HRQoL scores than patients without symptoms.
Discussion:
To our knowledge, this is the first study to determine in a holistic manner the impact of the non‐motor symptoms on HRQoL of Parkinson's disease patients. The results show that non‐motor symptoms have, as a whole, a greater impact on HRQoL than motor symptoms and non‐motor symptoms progression contributes importantly to HRQoL decline in patients with Parkinson's disease. © 2011 Movement Disorder Society
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8.
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
Journal Article
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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9.
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
Journal Article
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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10.
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
Journal Article
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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