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Assessing the consistency and validity of self-reported year of diagnosis among participants in a longitudinal study of people with multiple sclerosis

Claflin, SB ORCID: 0000-0001-6545-946X, Zhou, Y ORCID: 0000-0003-1962-2574, Taylor, BV and van der Mei, I ORCID: 0000-0001-9009-7472 2021 , 'Assessing the consistency and validity of self-reported year of diagnosis among participants in a longitudinal study of people with multiple sclerosis' , Multiple Sclerosis and Related Disorders, vol. 49 , pp. 1-6 , doi: 10.1016/j.msard.2021.102755.

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Abstract

Background: Self-reported outcomes are important for epidemiological research but are vulnerable to bias.Objective: In this study, we evaluated: 1) the consistency and validity of self-reported year of diagnosis amongpeople living with MS, 2) factors associated with participant inconsistency, and 3) the impact of observedinconsistency on the calculation of the Multiple Sclerosis Severity Score (MSSS).Methods: Using data collected by the Australian MS Longitudinal Study, we evaluated the consistency of selfreported year of diagnosis using correlation, mean differences, and percentage agreement. We examined theimpact of participant characteristics using Cragg hurdle models, and determined the effect of the observedinconsistency on MSSS using simulations compared with paired t-tests.Results: Of the 2,445 participants, 80.3% were within 1 year of their baseline year of diagnosis in all subsequentresponses (range of 2-10 responses). Participant inconsistency was positively associated with age at first responseand the number of years elapsed between the first and final response. However, the effect sizes of these associations were small. Finally, the observed inconsistency did not affect the calculation of MSSS (mean differencesmaller than 0.01; p>0.90 for all comparisons).Conclusion: This data provides support for the use of patient-reported year of diagnosis, as people with MS wereconsistent in reporting their year of diagnosis and the impact of any inconsistency on clinical outcomes, such asthe MSSS, was negligible.

Item Type: Article
Authors/Creators:Claflin, SB and Zhou, Y and Taylor, BV and van der Mei, I
Keywords: multiple sclerosis, year of diagnosis, self-reported data, consistency
Journal or Publication Title: Multiple Sclerosis and Related Disorders
Publisher: Elsevier B. V.
ISSN: 2211-0356
DOI / ID Number: 10.1016/j.msard.2021.102755
Copyright Information:

© 2021 Published by Elsevier B.V.

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