Claflin, SB and Zhou, Y and Taylor, BVM and van der Mei, I, 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, 49 pp. 1-6. ISSN 2211-0356 (2021) [Refereed Article]
© 2021 Published by Elsevier B.V.
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 among people living with MS, 2) factors associated with participant inconsistency, and 3) the impact of observed inconsistency 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 the impact of participant characteristics using Cragg hurdle models, and determined the effect of the observed inconsistency 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 subsequent responses (range of 2-10 responses). Participant inconsistency was positively associated with age at first response and 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 difference smaller 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 were consistent in reporting their year of diagnosis and the impact of any inconsistency on clinical outcomes, such as the MSSS, was negligible.
|Item Type:||Refereed Article|
|Keywords:||multiple sclerosis, year of diagnosis, self-reported data, consistency|
|Research Division:||Biomedical and Clinical Sciences|
|Research Field:||Neurology and neuromuscular diseases|
|Objective Group:||Public health (excl. specific population health)|
|Objective Field:||Public health (excl. specific population health) not elsewhere classified|
|UTAS Author:||Claflin, SB (Dr Suzi Claflin)|
|UTAS Author:||Zhou, Y (Mr Yuan Zhou)|
|UTAS Author:||Taylor, BVM (Professor Bruce Taylor)|
|UTAS Author:||van der Mei, I (Professor Ingrid van der Mei)|
|Deposited By:||Menzies Institute for Medical Research|
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