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Use of a self-rating scale of the nature and severity of symptoms in Parkinson's Disease (PRO-PD): Correlation with quality of life and existing scales of disease severity.

ABSTRACT: A self-rating scale was developed to permit patient-reported, remote assessment of Parkinson's disease symptom severity. The goal was to create a continuous outcome measure that does not require a clinical exam, does not fluctuate in response to dopaminergic medications, takes only a few minutes to complete, allows for stratification by symptom(s), and captures both motor and non-motor Parkinson's disease symptoms, major contributors to quality of life. The Patient Reported Outcomes in Parkinson's Disease (PRO-PD) is the cumulative score of 32 slider bars, each evaluating a common Parkinson's disease symptom. The PRO-PD has been used as an outcome measure in three studies. The baseline data from each of these studies were pooled for this analysis. Symptom frequency and severity are described, as well as correlation coefficients with existing measures of Parkinson's disease severity. Data on 1031 participants with Parkinson's disease were available for analysis. Fatigue, impaired handwriting, daytime sleepiness, slowness, tremor, muscle cramps, and forgetfulness were the most frequently reported symptoms. Persons with a relatively long duration of Parkinson's disease tended to report more, and more severe, symptoms. The PRO-PD was most highly correlated with the Parkinson's Disease Questionaire-39 (r??=??0.763, P??

SUBMITTER: Mischley LK

PROVIDER: S-EPMC5473828 | biostudies-literature | 2017

REPOSITORIES: biostudies-literature

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Use of a self-rating scale of the nature and severity of symptoms in Parkinson's Disease (PRO-PD): Correlation with quality of life and existing scales of disease severity.

Mischley Laurie K LK Lau Richard C RC Weiss Noel S NS

NPJ Parkinson's disease 20170616

A self-rating scale was developed to permit patient-reported, remote assessment of Parkinson's disease symptom severity. The goal was to create a continuous outcome measure that does not require a clinical exam, does not fluctuate in response to dopaminergic medications, takes only a few minutes to complete, allows for stratification by symptom(s), and captures both motor and non-motor Parkinson's disease symptoms, major contributors to quality of life. The Patient Reported Outcomes in Parkinson ...[more]

PMID: 28649620

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Project description:Upper and lower gastrointestinal dysautonomia symptoms (GIDS)--sialorrhea, dysphagia, and constipation are common in Parkinson's disease (PD) and often socially as well as physically disabling for patients. Available invasive quantitative measures for assessing these symptoms and their response to therapy are time-consuming, require specialized equipment, can cause patient discomfort and present patients with risk. The Movement Disorders Society commissioned a task force to assess available clinical rating scales, critique their clinimetric properties, and make recommendations regarding their clinical utility. Six clinical researchers and a biostatistician systematically searched the literature for scales of sialorrhea, dysphagia, and constipation, evaluated the scales' previous use, performance parameters, and quality of validation data (if available). A scale was designated "Recommended" if the scale was used in clinical studies beyond the group that developed it, has been specifically used in PD reports, and clinimetric studies have established that it is a valid, reliable, and sensitive. "Suggested" scales met at least part of the above criteria, but fell short of meeting all. Based on the systematic review, scales for individual symptoms of sialorrhea, dysphagia, and constipation were identified along with three global scales that include these symptoms in the context of assessing dysautonomia or nonmotor symptoms. Three sialorrhea scales met criteria for Suggested: Drooling Severity and Frequency Scale (DSFS), Drooling Rating Scale, and Sialorrhea Clinical Scale for PD (SCS-PD). Two dysphagia scales, the Swallowing Disturbance Questionnaire (SDQ) and Dysphagia-Specific Quality of Life (SWAL-QOL), met criteria for Suggested. Although Rome III constipation module is widely accepted in the gastroenterology community, and the earlier version from the Rome II criteria has been used in a single study of PD patients, neither met criteria for Suggested or Recommended. Among the global scales, the Scales for Outcomes in PD-Autonomic (SCOPA-AUT) and Nonmotor Symptoms Questionnaire for PD (NMSQuest) both met criteria for Recommended, and the Nonmotor Symptoms Scale (NMSS) met criteria for Suggested; however, none specifically focuses on the target gastrointestinal symptoms (sialorrhea, dysphagia, and constipation) of this report. A very small number of rating scales have been applied to studies of gastrointestinal-related dysautonomia in PD. Only two scales met "Recommended" criteria and neither focuses specifically on the symptoms of sialorrhea, dysphagia, and constipation. Further scale testing in PD among the scales that focus on these symptoms is warranted, and no new scales are needed until the available scales are fully tested clinimetrically.

Project description:BackgroundUnambiguous interpretation of ordered rating scale response categories requires distinct meanings of category labels. Also, summation of item responses into total scores assumes equal intervals between categories. While studies have identified problems with rating scale response category functioning there is a paucity of empirical studies regarding how respondents interpret response categories. We investigated the interpretation of commonly used rating scale response categories and attempted to identify distinct and roughly equally spaced response categories for patient-reported rating scales in Parkinson's disease (PD) and age-matched control subjects.MethodsTwenty-one rating scale response categories representing frequency, intensity and level of agreement were presented in random order to 51 people with PD (36 men; mean age, 66 years) and 36 age-matched controls (14 men; mean age, 66). Respondents indicated their interpretation of each category on 100-mm visual analog scales (VAS) anchored by Never--Always, Not at all--Extremely, and Totally disagree--Completely agree. VAS values were compared between groups, and response categories with mean values and non-overlapping 95% CIs corresponding to equally spaced locations on the VAS line were sought to identify the best options for three-, four-, five-, and six-category scales.ResultsVAS values did not differ between the PD and control samples (P = 0.286) or according to educational level (P = 0.220), age (P = 0.220), self-reported physical functioning (P = 0.501) and mental health (P = 0.238), or (for the PD sample) PD duration (P = 0.213) or presence of dyskinesias (P = 0.212). Attempts to identify roughly equally spaced response categories for three-, four-, five-, and six-category scales were unsuccessful, as the 95% CIs of one or several of the identified response categories failed to include the criterion values for equal distances.ConclusionsThis study offers an evidence base for selecting more interpretable patient-reported rating scale response categories. However, problems associated with raw rating scale data, primarily related to their ordinal structure also became apparent. This argues for the application of methodologies such as Rasch measurement. Rating scale response categories need to be treated with rigour in the construction and analysis of rating scales.

Dataset Information

Use of a self-rating scale of the nature and severity of symptoms in Parkinson's Disease (PRO-PD): Correlation with quality of life and existing scales of disease severity.

Publications

Use of a self-rating scale of the nature and severity of symptoms in Parkinson's Disease (PRO-PD): Correlation with quality of life and existing scales of disease severity.

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