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. 2023 Jul 26;23(1):542.
doi: 10.1186/s12888-023-04890-x.

Sociodemographic, mental health, and physical health factors associated with participation within re-contactable mental health cohorts: an investigation of the GLAD Study

Steven J Bright  1 , Christopher Hübel  1   2   3 , Katherine S Young  1   2 , Shannon Bristow  1   2 , Alicia J Peel  1 , Christopher Rayner  1   2 , Jessica Mundy  1   2 , Alish B Palmos  1   2 , Kirstin L Purves  1   2 , Gursharan Kalsi  1   2 , Cherie Armour  4 , Ian R Jones  5 , Matthew Hotopf  2   6 , Andrew M McIntosh  7 , Daniel J Smith  7 , James T R Walters  5 , Henry C Rogers  1   2 , Katherine N Thompson  1   2 , Brett N Adey  1   2 , Dina Monssen  1   2 , Saakshi Kakar  1   2 , Chelsea M Malouf  1   2 , Colette Hirsch  2   6   8 , Kiran Glen  1   2 , Emily J Kelly  1   2 , David Veale  6   8 , Thalia C Eley  1   2 , Gerome Breen  9   10 , Molly R Davies  1   2
Affiliations

Sociodemographic, mental health, and physical health factors associated with participation within re-contactable mental health cohorts: an investigation of the GLAD Study

Steven J Bright et al. BMC Psychiatry. .

Abstract

Background: The Genetic Links to Anxiety and Depression (GLAD) Study is a large cohort of individuals with lifetime anxiety and/or depression, designed to facilitate re-contact of participants for mental health research. At the start of the pandemic, participants from three cohorts, including the GLAD Study, were invited to join the COVID-19 Psychiatry and Neurological Genetics (COPING) study to monitor mental and neurological health. However, previous research suggests that participation in longitudinal studies follows a systematic, rather than random, process, which can ultimately bias results. Therefore, this study assessed participation biases following the re-contact of GLAD Study participants.

Methods: In April 2020, all current GLAD Study participants (N = 36,770) were invited to the COPING study. Using logistic regression, we investigated whether sociodemographic, mental, and physical health characteristics were associated with participation in the COPING baseline survey (aim one). Subsequently, we used a zero-inflated negative binomial regression to examine whether these factors were also related to participation in the COPING follow-up surveys (aim two).

Results: For aim one, older age, female gender identity, non-binary or self-defined gender identities, having one or more physical health disorders, and providing a saliva kit for the GLAD Study were associated with an increased odds of completing the COPING baseline survey. In contrast, lower educational attainment, Asian or Asian British ethnic identity, Black or Black British ethnic identity, higher alcohol consumption at the GLAD sign-up survey, and current or ex-smoking were associated with a reduced odds. For aim two, older age, female gender, and saliva kit provision were associated with greater COPING follow-up survey completion. Lower educational attainment, higher alcohol consumption at the GLAD Study sign-up, ex-smoking, and self-reported attention deficit hyperactivity disorder had negative relationships.

Conclusions: Participation biases surrounding sociodemographic and physical health characteristics were particularly evident when re-contacting the GLAD Study volunteers. Factors associated with participation may vary depending on study design. Researchers should examine the barriers and mechanisms underlying participation bias in order to combat these issues and address recruitment biases in future studies.

Keywords: COPING study; GLAD Study; Participation bias; Re-contact.

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Conflict of interest statement

Prof Breen has received honoraria, research or conference grants and consulting fees from Illumina, Otsuka, and COMPASS Pathfinder Ltd. Prof Hotopf is principal investigator of the RADAR-CNS consortium, an IMI public private partnership, and as such receives research funding from Janssen, UCB, Biogen, Lundbeck and MSD. Prof McIntosh has received research support from Eli Lilly, Janssen, and the Sackler Foundation, and has also received speaker fees from Illumina and Janssen. Prof Walters has received grant funding from Takeda for work unrelated to the GLAD Study. The remaining authors have nothing to disclose.

Figures

Fig. 1
Fig. 1
The COPING study timeline for re-contact and follow-ups of the GLAD Study cohort
Fig. 2
Fig. 2
Factors associated with participation across the COPING baseline and follow-up surveys after multiple testing corrections
Fig. 3
Fig. 3
Total COPING follow-up surveys completed by GLAD Study volunteers who completed the COPING baseline survey
See this image and copyright information in PMC

References

    1. Davies MR, Kalsi G, Armour C, Jones IR, McIntosh AM, Smith DJ, et al. The Genetic Links to Anxiety and Depression (GLAD) Study: Online recruitment into the largest recontactable study of depression and anxiety. Behav Res Ther. 2019;123:103503. doi: 10.1016/j.brat.2019.103503. - DOI - PMC - PubMed
    1. Young KS, Purves KL, Hübel C, Davies MR, Thompson KN, Bristow S, et al. Depression, anxiety and PTSD symptoms before and during the COVID-19 pandemic in the UK. 2021. Available from: psyarxiv.com/sf7b6 - PMC - PubMed
    1. Czeisler MÉ, Wiley JF, Czeisler CA, Rajaratnam SMW, Howard ME. Uncovering survivorship bias in longitudinal mental health surveys during the COVID-19 pandemic. Epidemiol Psychiatr Sci. 2021;26(30):e45. doi: 10.1017/S204579602100038X. - DOI - PMC - PubMed
    1. de Graaf R, van Dorsselaer S, Tuithof M, ten Have M. Sociodemographic and psychiatric predictors of attrition in a prospective psychiatric epidemiological study among the general population. Result of the Netherlands Mental Health Survey and Incidence Study-2. Compr Psychiatry. 2013;54(8):1131–9. doi: 10.1016/j.comppsych.2013.05.012. - DOI - PubMed
    1. Cabrera Alvarez P, James N Lynn P. Panel attrition in the General Population Sample and the Immigrant and Ethnic Minority Boost of Understanding Society. Understanding Society Working Paper. 2023: Colchester: University of Essex.

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