Optimizing hand-function patient outcome measures for inclusion body myositis

Neuromuscul Disord. 2020 Oct;30(10):807-814. doi: 10.1016/j.nmd.2020.08.358. Epub 2020 Aug 19.

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.

Keywords: Functional rating scale; Grip strength; Inclusion body myositis; Outcome measures; Patient reported outcome; Pinch strength.

Publication types

  • Observational Study

MeSH terms

  • Aged
  • Cross-Sectional Studies
  • Female
  • Functional Status*
  • Hand Strength / physiology*
  • Humans
  • Male
  • Middle Aged
  • Myositis, Inclusion Body / diagnosis*
  • Myositis, Inclusion Body / physiopathology*
  • Patient Reported Outcome Measures*
  • Pinch Strength / physiology
  • Severity of Illness Index*