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Optimizing hand-function patient outcome measures for inclusion body myositis.


ABSTRACT: Inclusion body myositis is the most commonly acquired myopathy after the age of 45. The slowly progressive and heterogeneous disorder is a challenge for measuring clinical trial efficacy. One current method for measuring progression utilizes the Inclusion Body Myositis-Functional Rating Scale. We have found that the upper extremity domain scores in the Inclusion Body Myositis-Functional Rating Scale do not consistently change until there is extreme loss of grip and finger flexor strength. Therefore, we performed a cross-sectional observational study of 83 inclusion body myositis patients and 38 controls recruited at the 2019 Annual Patient Conference of The Myositis Association. We evaluated new Inclusion Body Myositis Patient-Reported Outcome measures for upper extremity function modified from the NIH Patient-Reported Outcomes Measurement Information System as well as pinch and grip strength. We found that Patient-Reported Outcome measures hand-function have a higher correlation with pinch and grip strength than the Inclusion Body Myositis-Functional Rating Scale.

SUBMITTER: Lin AY 

PROVIDER: S-EPMC9756909 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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Optimizing hand-function patient outcome measures for inclusion body myositis.

Lin Ava Yun AY   Siener Catherine Sly CS   Faino Anna V AV   Seiffert Michelle M   Weihl Conrad C CC   Wang Leo H LH  

Neuromuscular disorders : NMD 20200819 10


Inclusion body myositis is the most commonly acquired myopathy after the age of 45. The slowly progressive and heterogeneous disorder is a challenge for measuring clinical trial efficacy. One current method for measuring progression utilizes the Inclusion Body Myositis-Functional Rating Scale. We have found that the upper extremity domain scores in the Inclusion Body Myositis-Functional Rating Scale do not consistently change until there is extreme loss of grip and finger flexor strength. Theref  ...[more]

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