PMID- 35107836 OWN - NLM STAT- MEDLINE DCOM- 20220502 LR - 20240214 IS - 1365-3016 (Electronic) IS - 0269-5022 (Print) IS - 0269-5022 (Linking) VI - 36 IP - 3 DP - 2022 May TI - Reasons for participation in a child development study: Are cases with developmental diagnoses different from controls? PG - 435-445 LID - 10.1111/ppe.12861 [doi] AB - BACKGROUND: Current knowledge about parental reasons for allowing child participation in research comes mainly from clinical trials. Fewer data exist on parents' motivations to enrol children in observational studies. OBJECTIVES: Describe reasons parents of preschoolers gave for participating in the Study to Explore Early Development (SEED), a US multi-site study of autism spectrum disorder (ASD) and other developmental delays or disorders (DD), and explore reasons given by child diagnostic and behavioural characteristics at enrolment. METHODS: We included families of children, age 2-5 years, participating in SEED (n = 5696) during 2007-2016. We assigned children to groups based on characteristics at enrolment: previously diagnosed ASD; suspected ASD; non-ASD DD; and population controls (POP). During a study interview, we asked parents their reasons for participating. Two coders independently coded responses and resolved discrepancies via consensus. We fit binary mixed-effects models to evaluate associations of each reason with group and demographics, using POP as reference. RESULTS: Participants gave 1-5 reasons for participation (mean = 1.7, SD = 0.7). Altruism (48.3%), ASD research interest (47.4%) and perceived personal benefit (26.9%) were most common. Two novel reasons were knowing someone outside the household with the study conditions (peripheral relationship; 14.1%) and desire to contribute to a specified result (1.4%). Odds of reporting interest in ASD research were higher among diagnosed ASD participants (odds ratio [OR] 2.89, 95% confidence interval [CI] 2.49-3.35). Perceived personal benefit had higher odds among diagnosed (OR 1.92, 95% CI 1.61-2.29) or suspected ASD (OR 3.67, 95% CI 2.99-4.50) and non-ASD DD (OR 1.80, 95% CI 1.50-2.16) participants. Peripheral relationship with ASD/DD had lower odds among all case groups. CONCLUSIONS: We identified meaningful differences between groups in parent-reported reasons for participation. Differences demonstrate an opportunity for future studies to tailor recruitment materials and increase the perceived benefit for specific prospective participants. CI - (c) 2022 John Wiley & Sons Ltd. FAU - Bradley, Chyrise B AU - Bradley CB AUID- ORCID: 0000-0001-5264-4340 AD - Department of Epidemiology, Gillings School of Global Public Health, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA. FAU - Tapia, Amanda L AU - Tapia AL AD - Department of Epidemiology, Gillings School of Global Public Health, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA. FAU - DiGuiseppi, Carolyn G AU - DiGuiseppi CG AD - Department of Epidemiology, Colorado School of Public Health, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA. FAU - Kepner, Marti W AU - Kepner MW AD - Department of Epidemiology, Gillings School of Global Public Health, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA. FAU - Kloetzer, Joy M AU - Kloetzer JM AD - Department of Epidemiology, Gillings School of Global Public Health, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA. FAU - Schieve, Laura A AU - Schieve LA AD - National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia, USA. FAU - Wiggins, Lisa D AU - Wiggins LD AD - National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia, USA. FAU - Windham, Gayle C AU - Windham GC AD - California Department of Public Health, Environmental Health Investigations Branch, Richmond, California, USA. FAU - Daniels, Julie L AU - Daniels JL AUID- ORCID: 0000-0002-9658-3743 AD - Department of Epidemiology, Gillings School of Global Public Health, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA. LA - eng GR - U10 DD000180/DD/NCBDD CDC HHS/United States GR - U10 DD000901/DD/NCBDD CDC HHS/United States GR - U10 DD000181/DD/NCBDD CDC HHS/United States GR - U10 DD000184/DD/NCBDD CDC HHS/United States GR - U10 DD000182/DD/NCBDD CDC HHS/United States GR - U01 DD001290/DD/NCBDD CDC HHS/United States GR - U10 DD000183/DD/NCBDD CDC HHS/United States GR - U01 DD001210/DD/NCBDD CDC HHS/United States GR - U01 DD000498/DD/NCBDD CDC HHS/United States GR - U01 DD001205/DD/NCBDD CDC HHS/United States GR - U01 DD000749/DD/NCBDD CDC HHS/United States GR - CC999999/ImCDC/Intramural CDC HHS/United States PT - Journal Article PT - Multicenter Study PT - Research Support, U.S. Gov't, P.H.S. DEP - 20220202 PL - England TA - Paediatr Perinat Epidemiol JT - Paediatric and perinatal epidemiology JID - 8709766 SB - IM MH - *Autism Spectrum Disorder/diagnosis/epidemiology MH - Child MH - Child Development/physiology MH - Child, Preschool MH - Developmental Disabilities/diagnosis/epidemiology MH - Humans MH - Odds Ratio MH - Parents MH - Prospective Studies PMC - PMC9169212 MID - NIHMS1805230 OTO - NOTNLM OT - case-control studies OT - child development OT - parental consent OT - participation reason COIS- CONFLICT OF INTEREST None to declare. EDAT- 2022/02/03 06:00 MHDA- 2022/05/03 06:00 PMCR- 2022/06/06 CRDT- 2022/02/02 12:16 PHST- 2021/12/10 00:00 [revised] PHST- 2021/07/14 00:00 [received] PHST- 2021/12/26 00:00 [accepted] PHST- 2022/02/03 06:00 [pubmed] PHST- 2022/05/03 06:00 [medline] PHST- 2022/02/02 12:16 [entrez] PHST- 2022/06/06 00:00 [pmc-release] AID - 10.1111/ppe.12861 [doi] PST - ppublish SO - Paediatr Perinat Epidemiol. 2022 May;36(3):435-445. doi: 10.1111/ppe.12861. Epub 2022 Feb 2.