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Deciphering the factors that influence participation in studies requiring serial lumbar punctures.

ABSTRACT: Introduction:Cerebrospinal fluid biomarkers increasingly inform the causes of dementia and may provide objective markers of disease progression. There is a need to decipher participant and procedural factors that promote participation in studies incorporating longitudinal biomarker measures. Methods:Participant and procedural factors associated with participation in longitudinal biomarker studies were determined in individuals enrolled in studies of memory and aging at the Knight Alzheimer Disease Research Center (Saint Louis, MO, USA). Results:Complications were encountered following 331 of 1484 lumbar punctures (22.3%; LPs), affecting 280 of 929 participants (30.1%); in >95% complications were minor. Three hundred fifteen of 679 eligible participants (46.4%) completed multiple LPs. Younger age (odds ratio [OR] 2.08 per decade [95% confidence interval (CI) 1.61-2.94]), normal cognition (OR 21.4 [2.85-160.1]), and the absence of heart disease (OR 2.0 [1.01-3.85]) or seizures at study entry identified participants with increased odds of completing three or more LPs. Discussion:Factors influencing participation may be leveraged to improve recruitment and retention within observational and therapeutic studies requiring serial LPs.

SUBMITTER: Day GS

PROVIDER: S-EPMC7085282 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Deciphering the factors that influence participation in studies requiring serial lumbar punctures.

Day Gregory S GS Rappai Tracy T Sathyan Sushila S Morris John C JC

Alzheimer's & dementia (Amsterdam, Netherlands) 20200206 1

<h4>Introduction</h4>Cerebrospinal fluid biomarkers increasingly inform the causes of dementia and may provide objective markers of disease progression. There is a need to decipher participant and procedural factors that promote participation in studies incorporating longitudinal biomarker measures.<h4>Methods</h4>Participant and procedural factors associated with participation in longitudinal biomarker studies were determined in individuals enrolled in studies of memory and aging at the Knight ...[more]

PMID: 32211499

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Project description:Cerebrospinal fluid (CSF) biomarkers for Alzheimer's disease and related disorders can provide early and accurate prediction of underlying neuropathology even when the clinical symptoms are mild, but lumbar punctures (LP) to obtain CSF can be perceived as frightening and invasive. We previously demonstrated that this negative perception of the LP is strongly associated with a negative LP experience in terms of discomfort and complications, but it is not known what factors can lead to a negative perception of the LP. It has also been proposed that LP is less well-perceived by adults in the U.S. compared to Europe and elsewhere, although there is a paucity of primary data to support this. To address these knowledge gaps, we conducted a survey of 237 younger and older adults in the Atlanta area including a significant number born outside of the U.S. (n = 82, 34%) to determine demographic, medical, and experiential factors associated with the perception of LP as well as the willingness to undergo LP for medical or research purposes. Our results show that one in four respondents in this cohort with limited first-hand LP experience viewed the LP as a frightening invasive procedure, but the majority (89%) were willing to undergo LP for medical reasons. General awareness of the LP was associated with both standard and negative views of the LP, but perception did not influence willingness to undergo the procedure. Multi-variate models showed that higher annual household income, not place of birth or past experience, was associated with greater willingness to undergo LPs. We conclude that Americans (born in the U.S. or abroad) are not resistant to LPs if there is useful information to improve their health, although there is limited enthusiasm to undergo LPs solely for research purposes. At the same time, we failed to find modifiable factors to improve the perception of LP among those who already perceive it as frightening and invasive. Future recruitment effort should target adults with no preconceived notion of the LP with emphasis on data related to safety and tolerability.

Dataset Information

Deciphering the factors that influence participation in studies requiring serial lumbar punctures.

Publications

Deciphering the factors that influence participation in studies requiring serial lumbar punctures.

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