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Patient-reported outcome measures in MS: Do development processes and patient involvement support valid
Trishna Bharadia1, Jo Vandercappellen2, Tanuja Chitnis3
1Patient Author, Marlow, UK.
Summary
Patient-reported outcomes (PROs) in multiple sclerosis (MS) studies often lack clear definitions and patient input, impacting data validity. Improving PRO instrument development is crucial for meaningful clinical trial results.
Area of Science:
- Neuroscience
- Clinical Research
- Patient-Reported Outcomes
Background:
- Patient-reported outcomes (PROs) are frequently used in multiple sclerosis (MS) research.
- Concerns exist regarding the variable quality and meaningfulness of data from PRO instruments due to inconsistent development processes.
Purpose of the Study:
- To review the development of commonly used PROs in MS studies.
- To assess concept definitions, conceptual frameworks, and patient involvement in PRO development.
- To gather insights from people living with MS (PlwMS) on their experiences with PROs.
Main Methods:
- Evaluated six PROs (FSIQ-RMS, modified-FIS, MSQoL-54, Leeds 8-item MSQoL, MSIS-29, EQ-5D) for adherence to regulatory and scientific standards.
- Assessed the extent to which PROs capture aspects of the disease important to PlwMS.
Main Results:
- Key measurement variables often lacked clear definitions and conceptualizations.
- Involvement of PlwMS in PRO development was inconsistent, and ethnic diversity was rarely documented.
- PlwMS highlighted individualization, understandability, time commitment, and administration method as critical for PRO usability.
Conclusions:
- PRO development frequently lacks clear definitions, conceptual frameworks, and patient engagement, compromising data validity.
- More robust PRO instrument development is essential to enhance the value of data from pivotal clinical trials in MS.
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