Pilot Study of the International Parkinson and Movement Disorder Society‐sponsored Non‐motor Rating Scale (MDS‐NMS)

Martinez‐Martín, Pablo; Schrag, Anette; Weintraub, Daniel; Rizos, Alexandra; Rodríguez‐Blázquez, Carmen

doi:10.1002/mdc3.12728

Cited by 34 publications

(31 citation statements)

References 41 publications

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“…It, therefore, seems useful for patients suffering from dystonia, in addition to an assessment of motor symptoms, to carry out an assessment of the coexisting non-motor symptoms (depression, anxiety, cognitive impairment). A quick and clinically useful self-assessment, similar to the Movement Disorder Society Non-motor Scale (MDS-NMS) for Parkinson's disease (Martinez-Martin et al 2019b), was recently published for dystonia patients (Klingelhoefer et al 2019). Our results provide further evidence for the profound impact of dystonia on patients' HR-QoL.…”

Section: Hr-qol In Dystonia Patientsmentioning

confidence: 53%

Caregiver burden and health-related quality of life in idiopathic dystonia patients under botulinum toxin treatment: a cross-sectional study

et al. 2019

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Dystonia is a chronic movement disorder that is associated with a reduction in health-related quality of life (HR-QoL) and restriction of activities of daily living. Botulinum neurotoxin (BT) improves disease-specific HR-QoL by reducing abnormal movements, postures, and pain. We examined the burden of the corresponding primary caregiver as a potential important factor for disease management and HR-QoL of dystonia patients under treatment with BT. 114 patients with focal, segmental, or generalized dystonia were recruited, together with 93 corresponding caregivers, whose burden was investigated using the Caregiver Burden Inventory. In addition, all participants were assessed for cognitive impairment, depression, anxiety, alexithymia, and HR-QoL. Only a small proportion of caregivers suffered from caregiver burden. Despite BT therapy, patients' HR-QoL was decreased compared to the age-matched general German population. Psychological symptoms, notably anxiety, and depression correlated significantly with reduced HR-QoL. Our data imply that caregiver burden emerged to be an issue in subgroups of dystonia patients. Furthermore, HR-QoL of dystonia patients is reduced even under optimized BT treatment in a specialized center.

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Section: Hr-qol In Dystonia Patientsmentioning

confidence: 53%

Caregiver burden and health-related quality of life in idiopathic dystonia patients under botulinum toxin treatment: a cross-sectional study

et al. 2019

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“…1. MDS‐NMS (see Appendix): After the pilot study, the final version of the MDS‐NMS has 52 items, grouped according to clinical content into 13 domains: (1) depression (5 items), (2) anxiety (4 items), (3) apathy (3 items), (4) psychosis (4 items), (5) impulse control and related disorders (4 items), (5) cognition (6 items), (7) orthostatic hypotension (2 items), (8) urinary (3 items), (9) sexual (2 items), (10) gastrointestinal (4 items), (11) sSleep and wakefulness (6 items), (12) pain (4 items), and (13) other (5 items; unintentional weight loss, decreased smell, physical fatigue, mental fatigue, and excessive sweating). Items are scored for frequency (from 0 [never] to 4 [majority of time]) and severity (from 0 [not present] to 4 [severe]), which are multiplied to generate the item total score.…”

Section: Methodsmentioning

confidence: 99%

“…The issues listed above led to the development and validation of a new, updated rater‐administered scale, the IPMDS Nonmotor Rating Scale (MDS‐NMS), based on the NMSS and supported by the IPMDS. Data on acceptability and reliability of the preliminary version of the MDS‐NMS in a study population of neurologists, PD patients and healthy controls as part of a cognitive pretesting study have been reported . Here we report the clinimetric properties of the MDS‐NMS from a formal validation study.…”

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confidence: 99%

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The Movement Disorder Society Nonmotor Rating Scale: Initial Validation Study

et al. 2019

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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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“…Both are suitable for detecting prevalence of NMS within PD populations [51] and have been used as secondary outcomes in PD trials. The MDS-NMS has recently been published [52].…”

Section: Non-motor Symptomsmentioning

confidence: 99%

Is It Possible to Conduct a Multi-Arm Multi-Stage Platform Trial in Parkinson’s Disease: Lessons Learned from Other Neurodegenerative Disorders and Cancer

Zeissler

Parmar

et al. 2020

JPD

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Many potential disease modifying therapies have been identified as suitable for clinical evaluation in Parkinson's disease (PD). Currently, the evaluation of compounds in phase II and phase III clinical trials in PD are set up in isolation, a process that is lengthy, costly and lacks efficiency. This review will introduce the concept of a multi-arm, multi-stage (MAMS) trial platform which allows for the assessment of several potential therapies at once, transitioning seamlessly from a phase II safety and efficacy study to a phase III trial by means of an interim analysis. At the interim checkpoint, ineffective arms are dropped and replaced by new treatment arms, thereby allowing for the continuous evaluation of interventions. MAMS trial platforms already exist for prostate, renal and oropharyngeal cancer and are currently being developed for progressive multiple sclerosis (PMS) and motor neuron disease (MND) within the UK. As a MAMS trial will evaluate many potential treatments it is of critical importance that a widely endorsed core protocol is developed which will investigate outcomes and objectives meaningful to patients. This review will discuss the challenges of drug selection, trial design, stratification and outcome measures and will share strategies implemented in the planned MAMS trials for MND and PMS that may be of interest to the PD field.

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Pilot Study of the International Parkinson and Movement Disorder Society‐sponsored Non‐motor Rating Scale (MDS‐NMS)

Cited by 34 publications

References 41 publications

Caregiver burden and health-related quality of life in idiopathic dystonia patients under botulinum toxin treatment: a cross-sectional study

Caregiver burden and health-related quality of life in idiopathic dystonia patients under botulinum toxin treatment: a cross-sectional study

The Movement Disorder Society Nonmotor Rating Scale: Initial Validation Study

Is It Possible to Conduct a Multi-Arm Multi-Stage Platform Trial in Parkinson’s Disease: Lessons Learned from Other Neurodegenerative Disorders and Cancer

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