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.