Listening to MSers for new Outcomes

Epub: Learmonth et ak. Validation of patient determined disease steps (PDDS) scale scores in persons with multiple sclerosis. BMC Neurol. 2013 Apr;13(1):37.]

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 SclerosisWalking 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. PDDS and EDSS scores were strongly correlated with Pyramidal and Cerebellar  FS scores as well as 6 MW distance, MSWS-12 scores and accelerometer steps/day


CONCLUSION: This study provides novel evidence supporting the PDDS as valid PRO of disability in MS.



Outcomes measures are critical to moving new options forward. The EDSS is an insensitive tool and we need better so why not listen to MSers and see what they feel.

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