Validation of patient determined disease steps (PDDS) scale scores in persons with multiple sclerosis.

BMC Neurology (Impact Factor: 2.49). 04/2013; 13(1):37. DOI: 10.1186/1471-2377-13-37
Source: PubMed

ABSTRACT BACKGROUND: The Patient Determined Disease Steps (PDDS) is a promising patient-reported outcome (PRO) of disability in multiple sclerosis (MS). To date, there is limited evidence regarding the validity of PDDS scores, despite its sound conceptual development and broad inclusion in MS research.This study examined the validity of the PDDS based on (1) the association with Expanded Disability Status Scale (EDSS) scores and (2) the pattern of associations between PDDS and EDSS scores with Functional System (FS) scores as well as ambulatory and other outcomes. METHODS: 96 persons with MS provided demographic/clinical information, completed the PDDS and other PROs including the Multiple Sclerosis Walking Scale-12 (MSWS-12), and underwent a neurological examination for generating FS and EDSS scores. Participants completed assessments of cognition, ambulation including the 6-minute walk (6 MW), and wore an accelerometer during waking hours over seven days. RESULTS: There was a strong correlation between EDSS and PDDS scores (rho = .783). PDDS and EDSS scores were strongly correlated with Pyramidal (rho = .578 & rho = .647, respectively) and Cerebellar (rho = .501 & rho = .528, respectively) FS scores as well as 6 MW distance (rho = .704 & rho = .805, respectively), MSWS-12 scores (rho = .801 & rho = .729, respectively), and accelerometer steps/day (rho = -.740 & rho = -.717, respectively). CONCLUSION: This study provides novel evidence supporting the PDDS as valid PRO of disability in MS.

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    ABSTRACT: Objectives. To explore the association between meditation and health related quality of life (HRQOL), depression, fatigue, disability level, relapse rates, and disease activity in a large international sample of people with multiple sclerosis (MS). Methods. Participants were invited to take part in an online survey and answer questions relating to HRQOL, depression, fatigue, disability, relapse rates, and their involvement in meditation practices. Results. Statistically and potentially clinically significant differences between those who meditated once a week or more and participants who never meditated were present for mean mental health composite (MHC) scores, cognitive function scale, and health perception scale. The MHC results remained statistically significant on multivariate regression modelling when covariates were accounted for. Physical health composite (PHC) scores were higher in those that meditated; however, the differences were probably not clinically significant. Among those who meditated, fewer screened positive for depression, but there was no relationship with fatigue or relapse rate. Those with worsened disability levels were more likely to meditate. Discussion. The study reveals a significant association between meditation, lower risk of depression, and improved HRQOL in people with MS.
    Behavioural neurology 01/2014; 2014:916519. DOI:10.1155/2014/916519 · 1.64 Impact Factor
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    ABSTRACT: Sexual dysfunction (SD) is a common symptom in multiple sclerosis (MS). As body image concerns may be related to SD, this study focused on predictors of body image related SD in a sample of MS patients. To evaluate correlates of body image related SD, including sociodemographics, mental health, and select illness variables including help-seeking behaviors for sexual problems, time since MS diagnosis, and self-reported disability status. This study utilized de-identified, archived data from a MS patient registry, the North American Research Committee on Multiple Sclerosis (NARCOMS). The sample consisted of 4,267 respondents to the NARCOMS questionnaire, which included a reliable and valid instrument for assessing SD. People who had higher scores on body image related SD were less educated, female, with longer disease duration and greater disability. They reported poorer mental health and seeking treatment for sexual problems less frequently. In the final regression model, age, employment status, and race were not significantly related to body image related SD in MS. The results of the study offer evidence that body image related SD in MS is a complex, multi-factorial phenomenon that is related to a variety of demographic, mental health, and disease related variables.
    Sexuality and Disability 03/2015; 33(1). DOI:10.1007/s11195-014-9357-5 · 0.72 Impact Factor
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    ABSTRACT: (1)To describe the prevalence and severity of tremor in patients with multiple sclerosis (MS) registered within a large North American MS registry; (2) to provide detailed descriptions on the characteristics and severity of tremor in a subset of registrants and (3) to compare several measures of tremor severity for strength of agreement. The North American Research Committee on MS (NARCOMS) registry. Registrants of NARCOMS reporting mild or greater tremor severity. We determined the cross-sectional prevalence of tremor in the NARCOMS registry over three semiannual updates between fall 2010 and fall 2011. A subset of registrants (n=552) completed a supplemental survey providing detailed descriptions of their tremor. Outcomes included descriptive characteristics of their tremors and correlations between outcome measures to determine the strength of agreement in assessing tremor severity. The estimated prevalence of tremor in NARCOMS ranged from 45% to 46.8%, with severe tremor affecting 5.5-5.9% of respondents. In the subset completing the supplemental survey, mild tremor severity was associated with younger age of MS diagnosis and tremor onset than those with moderate or severe tremor. However, tremor severity did not differ by duration of disease or tremor. Respondents provided descriptions of tremor symptoms on the Clinical Ataxia Rating Scale, which had a moderate to good (ρ=0.595) correlation with the Tremor Related Activities of Daily Living (TRADL) scale. Objectively scored Archimedes' spirals had a weaker (ρ=0.358) correlation with the TRADL. Rates of unemployment, disability and symptomatic medication use increased with tremor severity, but were high even among those with mild tremor. Tremor is common among NARCOMS registrants and severely disabling for some. Both ADL-based and symptom-descriptive measures of tremor severity can be used to stratify patients. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to
    BMJ Open 01/2015; 5(1):e006714. DOI:10.1136/bmjopen-2014-006714 · 2.06 Impact Factor

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