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.]

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.

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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  • I need to ask you blokes about modafinil for MS.

    The Guardian ran an article ( on neuroenhancers greatly improving the lives of MSers, yet modafinil is banned in the UK and US as a treatment for MS despite colossal evidence of its benefits.

    MouseDoc and Gavin G: Is it safe for me to procure modafinil over the internet? So many others are doing it, I feel like I'm missing out.

    • As a point of policy I would advise you to get drugs from a Doctor/Neurologist and not the postman (do we call them post officer to be PC).

      All drugs have side effects and these may interact with other drugs. If you buy internet drugs do you now if they are of a high enough quality?

    • I don't think modafinil is banned? In the US I am able to get it with a prescription from my neurologist.

  • If EDSS is insensituve and PDDS is streongly associated with EDSS, won't that mean PDDS is insensitive too?



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