Related Experiment Video
Updated: Dec 9, 2025
Utility of Dissociated Intrinsic Hand Muscle Atrophy in the Diagnosis of Amyotrophic Lateral Sclerosis
Published on: March 4, 2014
Optimizing hand-function patient outcome measures for inclusion body myositis
Ava Yun Lin1, Catherine Sly Siener2, Anna V Faino3
1Department of Neurology, Stanford University, Stanford Neuroscience Health Center, 213 Quarry Road, M/C 5956, Palo Alto, CA 94305, Unted States.
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.
Insights
New patient-reported outcome measures for inclusion body myositis (IBM) hand function show better correlation with strength tests than the current IBM-Functional Rating Scale, aiding clinical trial efficacy measurement.
Area of Science:
- Neurology
- Rheumatology
- Clinical Trials
Background:
- Inclusion body myositis (IBM) is the most common acquired myopathy in individuals over 45.
- IBM is a slowly progressive and heterogeneous disorder, posing challenges for clinical trial efficacy measurement.
- The current Inclusion Body Myositis-Functional Rating Scale (IBM-FS) upper extremity domain may not detect changes until significant strength loss.
Purpose of the Study:
- To evaluate novel patient-reported outcome measures (PROMs) for upper extremity function in IBM.
- To compare the sensitivity of new PROMs and the IBM-FS to changes in grip and pinch strength.
- To identify more responsive outcome measures for IBM clinical trials.
Main Methods:
- A cross-sectional observational study was conducted with 83 IBM patients and 38 controls.
- Participants were recruited at The Myositis Association's 2019 Annual Patient Conference.
- New upper extremity function PROMs, adapted from NIH PROMIS, were assessed alongside pinch and grip strength.
Main Results:
- New IBM patient-reported outcome measures for hand function demonstrated a higher correlation with pinch and grip strength.
- The IBM-FS upper extremity domain showed less consistent changes compared to strength metrics.
- PROMs offer a potentially more sensitive assessment of upper extremity function in IBM.
Conclusions:
- Novel PROMs for hand function are more closely aligned with objective strength measures in IBM.
- These findings suggest that new PROMs may improve the ability to measure clinical trial efficacy in IBM.
- Further validation of these PROMs is recommended for use in IBM research and clinical practice.
