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; Christopher Hübel; Katherine S. Young; Shannon Bristow; Alicia J. Peel; Christopher Rayner; Jessica Mundy; Alish B. Palmos; Kirstin L. Purves; Gursharan Kalsi; Cherie Armour; Ian R. Jones; Matthew Hotopf; Andrew M. McIntosh; Daniel J. Smith; James T.R. Walters; Henry C. Rogers; Katherine N. Thompson; Brett N. Adey; Dina Monssen; Saakshi Kakar; Chelsea M. Malouf; Colette Hirsch; Kiran Glen; Emily J. Kelly; David Veale; Thalia C. Eley; Gerome Breen; Molly R. Davies

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, Christopher Hübel, Katherine S. Young, Shannon Bristow, Alicia J. Peel, Christopher Rayner, Jessica Mundy, Alish B. Palmos, Kirstin L. Purves, Gursharan Kalsi, Cherie Armour, Ian R. Jones, Matthew Hotopf, Andrew M. McIntosh, Daniel J. Smith, James T.R. Walters, Henry C. Rogers, Katherine N. Thompson, Brett N. Adey, Dina MonssenSaakshi Kakar, Chelsea M. Malouf, Colette Hirsch, Kiran Glen, Emily J. Kelly, David Veale, Thalia C. Eley, Gerome Breen^*, Molly R. Davies

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

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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.

Original language	English
Article number	542
Journal	BMC Psychiatry
Volume	23
Issue number	1
DOIs	https://doi.org/10.1186/s12888-023-04890-x
Publication status	Published - Dec 2023

Keywords

COPING study
GLAD Study
Participation bias
Re-contact

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1186/s12888-023-04890-x

COPING Participation - Author manuscriptAccepted author manuscript, 540 KBLicence: CC BY

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Bright, S. J., Hübel, C., Young, K. S., Bristow, S., Peel, A. J., Rayner, C., Mundy, J., Palmos, A. B., Purves, K. L., Kalsi, G., Armour, C., Jones, I. R., Hotopf, M., McIntosh, A. M., Smith, D. J., Walters, J. T. R., Rogers, H. C., Thompson, K. N., Adey, B. N., ... Davies, M. R. (2023). Sociodemographic, mental health, and physical health factors associated with participation within re-contactable mental health cohorts: an investigation of the GLAD Study. BMC Psychiatry, 23(1), Article 542. https://doi.org/10.1186/s12888-023-04890-x

@article{1f6a2573e2f74306a8a02f94e63c62a3,

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

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",

author = "Bright, {Steven J.} and Christopher H{\"u}bel and Young, {Katherine S.} and Shannon Bristow and Peel, {Alicia J.} and Christopher Rayner and Jessica Mundy and Palmos, {Alish B.} and Purves, {Kirstin L.} and Gursharan Kalsi and Cherie Armour and Jones, {Ian R.} and Matthew Hotopf and McIntosh, {Andrew M.} and Smith, {Daniel J.} and Walters, {James T.R.} and Rogers, {Henry C.} and Thompson, {Katherine N.} and Adey, {Brett N.} and Dina Monssen and Saakshi Kakar and Malouf, {Chelsea M.} and Colette Hirsch and Kiran Glen and Kelly, {Emily J.} and David Veale and Eley, {Thalia C.} and Gerome Breen and Davies, {Molly R.}",

note = "Funding Information: We thank the GLAD Study volunteers for their participation, and gratefully acknowledge the National Institute for Health and Care Research (NIHR) BioResource, NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health and Care Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. This study presents independent research funded by the NIHR Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King{\textquoteright}s College London. Further information can be found at http://brc.slam.nhs.uk/about/core-facilities-bioresource . The views expressed are those of the authors and not necessarily those of the NHS, NIHR, HSC R&D Division, the Department of Health and Social Care, or King{\textquoteright}s College London. For the purposes of open access, the author has applied a Creative Commons Attribution (CC BY) licence to any Accepted Author Manuscript version arising from this submission. Funding Information: We thank the GLAD Study volunteers for their participation, and gratefully acknowledge the National Institute for Health and Care Research (NIHR) BioResource, NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health and Care Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. This study presents independent research funded by the NIHR Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King{\textquoteright}s College London. Further information can be found at http://brc.slam.nhs.uk/about/core-facilities-bioresource. The views expressed are those of the authors and not necessarily those of the NHS, NIHR, HSC R&D Division, the Department of Health and Social Care, or King{\textquoteright}s College London. For the purposes of open access, the author has applied a Creative Commons Attribution (CC BY) licence to any Accepted Author Manuscript version arising from this submission. Funding Information: This work was supported by the National Institute for Health and Care Research (NIHR) BioResource [RG94028, RG85445], NIHR Biomedical Research Centre [IS-BRC-1215–20018], HSC R&D Division, Public Health Agency [COM/5516/18], MRC Mental Health Data Pathfinder Award (MC_PC_17,217), and the National Centre for Mental Health funding through Health and Care Research Wales. Prof Eley and Prof Breen are part-funded by a program grant from the UK Medical Research Council (MR/V012878/1). Alicia J Peel acknowledge funding from the Economic and Social Research Council (ESRC) as part of a PhD studentship. Dr H{\"u}bel acknowledges funding from Lundbeckfonden (R276-2018–4581). Jessica Mundy acknowledges funding from the Lord Leverhulme Charitable Grant. Brett N Adey acknowledges funding through a Pre-doctoral Fellowship from the NIHR (NIHR301067). Publisher Copyright: {\textcopyright} 2023, The Author(s).",

year = "2023",

month = dec,

doi = "10.1186/s12888-023-04890-x",

language = "English",

volume = "23",

journal = "BMC Psychiatry",

issn = "1471-244X",

publisher = "BioMed Central",

number = "1",

}

Bright, SJ, Hübel, C, Young, KS , Bristow, S, Peel, AJ, Rayner, C, Mundy, J, Palmos, AB, Purves, KL, Kalsi, G, Armour, C, Jones, IR, Hotopf, M, McIntosh, AM, Smith, DJ, Walters, JTR, Rogers, HC , Thompson, KN, Adey, BN, Monssen, D, Kakar, S, Malouf, CM, Hirsch, C, Glen, K, Kelly, EJ , Veale, D , Eley, TC, Breen, G & Davies, MR 2023, 'Sociodemographic, mental health, and physical health factors associated with participation within re-contactable mental health cohorts: an investigation of the GLAD Study', BMC Psychiatry, vol. 23, no. 1, 542. https://doi.org/10.1186/s12888-023-04890-x

TY - JOUR

T1 - Sociodemographic, mental health, and physical health factors associated with participation within re-contactable mental health cohorts

T2 - an investigation of the GLAD Study

AU - Bright, Steven J.

AU - Hübel, Christopher

AU - Young, Katherine S.

AU - Bristow, Shannon

AU - Peel, Alicia J.

AU - Rayner, Christopher

AU - Mundy, Jessica

AU - Palmos, Alish B.

AU - Purves, Kirstin L.

AU - Kalsi, Gursharan

AU - Armour, Cherie

AU - Jones, Ian R.

AU - Hotopf, Matthew

AU - McIntosh, Andrew M.

AU - Smith, Daniel J.

AU - Walters, James T.R.

AU - Rogers, Henry C.

AU - Thompson, Katherine N.

AU - Adey, Brett N.

AU - Monssen, Dina

AU - Kakar, Saakshi

AU - Malouf, Chelsea M.

AU - Hirsch, Colette

AU - Glen, Kiran

AU - Kelly, Emily J.

AU - Veale, David

AU - Eley, Thalia C.

AU - Breen, Gerome

AU - Davies, Molly R.

N1 - Funding Information: We thank the GLAD Study volunteers for their participation, and gratefully acknowledge the National Institute for Health and Care Research (NIHR) BioResource, NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health and Care Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. This study presents independent research funded by the NIHR Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London. Further information can be found at http://brc.slam.nhs.uk/about/core-facilities-bioresource . The views expressed are those of the authors and not necessarily those of the NHS, NIHR, HSC R&D Division, the Department of Health and Social Care, or King’s College London. For the purposes of open access, the author has applied a Creative Commons Attribution (CC BY) licence to any Accepted Author Manuscript version arising from this submission. Funding Information: We thank the GLAD Study volunteers for their participation, and gratefully acknowledge the National Institute for Health and Care Research (NIHR) BioResource, NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health and Care Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. This study presents independent research funded by the NIHR Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London. Further information can be found at http://brc.slam.nhs.uk/about/core-facilities-bioresource. The views expressed are those of the authors and not necessarily those of the NHS, NIHR, HSC R&D Division, the Department of Health and Social Care, or King’s College London. For the purposes of open access, the author has applied a Creative Commons Attribution (CC BY) licence to any Accepted Author Manuscript version arising from this submission. Funding Information: This work was supported by the National Institute for Health and Care Research (NIHR) BioResource [RG94028, RG85445], NIHR Biomedical Research Centre [IS-BRC-1215–20018], HSC R&D Division, Public Health Agency [COM/5516/18], MRC Mental Health Data Pathfinder Award (MC_PC_17,217), and the National Centre for Mental Health funding through Health and Care Research Wales. Prof Eley and Prof Breen are part-funded by a program grant from the UK Medical Research Council (MR/V012878/1). Alicia J Peel acknowledge funding from the Economic and Social Research Council (ESRC) as part of a PhD studentship. Dr Hübel acknowledges funding from Lundbeckfonden (R276-2018–4581). Jessica Mundy acknowledges funding from the Lord Leverhulme Charitable Grant. Brett N Adey acknowledges funding through a Pre-doctoral Fellowship from the NIHR (NIHR301067). Publisher Copyright: © 2023, The Author(s).

PY - 2023/12

Y1 - 2023/12

N2 - 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.

AB - 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.

KW - COPING study

KW - GLAD Study

KW - Participation bias

KW - Re-contact

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U2 - 10.1186/s12888-023-04890-x

DO - 10.1186/s12888-023-04890-x

M3 - Article

AN - SCOPUS:85165907780

SN - 1471-244X

VL - 23

JO - BMC Psychiatry

JF - BMC Psychiatry

IS - 1

M1 - 542

ER -

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

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Keywords

UN SDGs

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