Literature DB >> 33731014

Challenges, facilitators and barriers to screening study participants in early disease stages-experience from the MACUSTAR study.

Jan Henrik Terheyden1, Charlotte Behning2, Anna Lüning3, Ludmila Wintergerst3, Pier G Basile4, Diana Tavares4, Beatriz A Melício4, Sergio Leal5, George Weissgerber6, Ulrich F O Luhmann7, David P Crabb8, Adnan Tufail9, Carel Hoyng10, Moritz Berger2, Matthias Schmid2, Rufino Silva4,11,12, Cecília V Martinho4, José Cunha-Vaz4, Frank G Holz3, Robert P Finger13.   

Abstract

BACKGROUND: Recruiting asymptomatic participants with early disease stages into studies is challenging and only little is known about facilitators and barriers to screening and recruitment of study participants. Thus we assessed factors associated with screening rates in the MACUSTAR study, a multi-centre, low-interventional cohort study of early stages of age-related macular degeneration (AMD).
METHODS: Screening rates per clinical site and per week were compiled and applicable recruitment factors were assigned to respective time periods. A generalized linear mixed-effects model including the most relevant recruitment factors identified via in-depth interviews with study personnel was fitted to the screening data. Only participants with intermediate AMD were considered.
RESULTS: A total of 766 individual screenings within 87 weeks were available for analysis. The mean screening rate was 0.6 ± 0.9 screenings per week among all sites. The participation at investigator teleconferences (relative risk increase 1.466, 95% CI [1.018-2.112]), public holidays (relative risk decrease 0.466, 95% CI [0.367-0.591]) and reaching 80% of the site's recruitment target (relative risk decrease 0.699, 95% CI [0.367-0.591]) were associated with the number of screenings at an individual site level.
CONCLUSIONS: Careful planning of screening activities is necessary when recruiting early disease stages in multi-centre observational or low-interventional studies. Conducting teleconferences with local investigators can increase screening rates. When planning recruitment, seasonal and saturation effects at clinical site level need to be taken into account. TRIAL REGISTRATION: ClinicalTrials.gov NCT03349801 . Registered on 22 November 2017.

Entities:  

Keywords:  Age-related macular degeneration; Cohort study; Early disease stages; Recruitment; Screening

Mesh:

Year:  2021        PMID: 33731014      PMCID: PMC7967977          DOI: 10.1186/s12874-021-01243-8

Source DB:  PubMed          Journal:  BMC Med Res Methodol        ISSN: 1471-2288            Impact factor:   4.615


  28 in total

1.  Longitudinal changes in microperimetry and low luminance visual acuity in age-related macular degeneration.

Authors:  Zhichao Wu; Lauren N Ayton; Chi D Luu; Robyn H Guymer
Journal:  JAMA Ophthalmol       Date:  2015-04       Impact factor: 7.389

Review 2.  Barriers to participation in randomised controlled trials: a systematic review.

Authors:  S Ross; A Grant; C Counsell; W Gillespie; I Russell; R Prescott
Journal:  J Clin Epidemiol       Date:  1999-12       Impact factor: 6.437

Review 3.  MACUSTAR: Development and Clinical Validation of Functional, Structural, and Patient-Reported Endpoints in Intermediate Age-Related Macular Degeneration.

Authors:  Robert P Finger; Steffen Schmitz-Valckenberg; Matthias Schmid; Gary S Rubin; Hannah Dunbar; Adnan Tufail; David P Crabb; Alison Binns; Clara I Sánchez; Philippe Margaron; Guillaume Normand; Mary K Durbin; Ulrich F O Luhmann; Parisa Zamiri; José Cunha-Vaz; Friedrich Asmus; Frank G Holz
Journal:  Ophthalmologica       Date:  2018-08-28       Impact factor: 3.250

Review 4.  Causes of vision loss worldwide, 1990-2010: a systematic analysis.

Authors:  Rupert R A Bourne; Gretchen A Stevens; Richard A White; Jennifer L Smith; Seth R Flaxman; Holly Price; Jost B Jonas; Jill Keeffe; Janet Leasher; Kovin Naidoo; Konrad Pesudovs; Serge Resnikoff; Hugh R Taylor
Journal:  Lancet Glob Health       Date:  2013-11-11       Impact factor: 26.763

5.  How evidence based are recruitment strategies to randomized controlled trials in primary care? Experience from seven studies.

Authors:  R Foy; J Parry; A Duggan; B Delaney; S Wilson; N Th Lewin-Van Den Broek; A Lassen; L Vickers; P Myres
Journal:  Fam Pract       Date:  2003-02       Impact factor: 2.267

6.  Improving the recruitment activity of clinicians in randomised controlled trials: a systematic review.

Authors:  Ben Fletcher; Adrian Gheorghe; David Moore; Sue Wilson; Sarah Damery
Journal:  BMJ Open       Date:  2012-01-06       Impact factor: 2.692

Review 7.  Increasing recruitment to randomised trials: a review of randomised controlled trials.

Authors:  Judith M Watson; David J Torgerson
Journal:  BMC Med Res Methodol       Date:  2006-07-19       Impact factor: 4.615

8.  Report From the NEI/FDA Endpoints Workshop on Age-Related Macular Degeneration and Inherited Retinal Diseases.

Authors:  Karl Csaky; Frederick Ferris; Emily Y Chew; Prashant Nair; Janet K Cheetham; Jacque L Duncan
Journal:  Invest Ophthalmol Vis Sci       Date:  2017-07-01       Impact factor: 4.799

9.  Clinical study protocol for a low-interventional study in intermediate age-related macular degeneration developing novel clinical endpoints for interventional clinical trials with a regulatory and patient access intention-MACUSTAR.

Authors:  Jan H Terheyden; Frank G Holz; Steffen Schmitz-Valckenberg; Anna Lüning; Matthias Schmid; Gary S Rubin; Hannah Dunbar; Adnan Tufail; David P Crabb; Alison Binns; Clara I Sánchez; Carel Hoyng; Philippe Margaron; Nadia Zakaria; Mary Durbin; Ulrich Luhmann; Parisa Zamiri; José Cunha-Vaz; Cecília Martinho; Sergio Leal; Robert P Finger
Journal:  Trials       Date:  2020-07-18       Impact factor: 2.279

Review 10.  A reinvestigation of recruitment to randomised, controlled, multicenter trials: a review of trials funded by two UK funding agencies.

Authors:  Ben G O Sully; Steven A Julious; Jon Nicholl
Journal:  Trials       Date:  2013-06-09       Impact factor: 2.279

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