Strategies to Enhance Retention in a Cohort Study Among Adults of Turkish Descent Living in Berlin

Dornquast, Christina; Reinhold, Thomas; Solak, S; Durak, Melike; Becher, Heiko; Riens, Burgi; Icke, Katja; Willich, Stefan N.; Keil, Thomas; Krist, Lilian

doi:10.1007/s10903-021-01309-1

Cited by 3 publications

(1 citation statement)

References 40 publications

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“…Participation proportions also vary considerably across social groups [ 1 , 23 , 63 ]. For instance, participation proportions in surveys and genomic cohort studies have been found to be lower for men [ 47 ] and ethnic minorities [ 44 61 37 20 ] or migrant populations [ 63 74 ]. Participants in longitudinal research are more likely to be educated to at least undergraduate level [ 11 25 ].…”

Section: Introductionmentioning

confidence: 99%

Investigating people’s attitudes towards participating in longitudinal health research: an intersectionality-informed perspective

Merz

Jaehn²,

Pischon³

et al. 2023

Int J Equity Health

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Background Increasing evidence suggests that participation proportions in longitudinal health research vary according to sex/gender, age, social class, or migration status. Intersectionality scholarship purports that such social categories cannot be understood in isolation and makes visible the co-dependent nature of the social determinants of health and illness. This paper uses an intersectionality-informed approach in order to expand the understanding of why people participate in health research, and the impact of intersecting social structures and experiences on these attitudes. Methods A sample of 80 respondents who had previously either accepted or declined an invitation to participate in the German National Cohort (NAKO) participated in our interview study. Interviews were semi-structured and contained both narrative elements and more structured probes. Data analysis proceeded in two steps: first, the entire data set was analysed thematically (separately for participants and non-participants); second, key themes were compared across self-reported sex/gender, age group and migration status to identify differences and commonalities. Results Respondents’ attitudes towards study participation can be categorised into four themes: wanting to make a contribution, seeking personalised health information, excitement and feeling chosen, and seeking social recognition. Besides citing logistical challenges, non-participants narrated adverse experiences with or attitudes towards science and the healthcare system that deterred them from participating. A range of social experiences and cultural value systems shaped such attitudes; in particular, this includes the cultural authority of science as an arbiter of social questions, transgressing social categories and experiences of marginalisation. Care responsibilities, predominantly borne by female respondents, also impacted upon the decision to take part in NAKO. Discussion Our findings suggest that for participants, health research constitutes a site of distinction in the sense of making a difference and being distinct or distinguishable, whereas non-participants inhabited an orientation towards science that reflected their subjective marginalisation through science. No clear relationship can thereby be presumed between social location and a particular attitude towards study participation; rather, such attitudes transgress and challenge categorical boundaries. This challenges the understanding of particular populations as more or less disadvantaged, or as more or less inclined to participate in health research.

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Section: Introductionmentioning

confidence: 99%

Investigating people’s attitudes towards participating in longitudinal health research: an intersectionality-informed perspective

Merz

Jaehn²,

Pischon³

et al. 2023

Int J Equity Health

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The limitations of large-scale volunteer databases to address inequalities and global challenges in health and aging

Brayne

Moffitt

2022

Nat Aging

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Evaluating bias with loss to follow-up in a community-based cohort: empirical investigation from the CARRS Study

Kondal,

Awasthi,

Patel

et al. 2024

J Epidemiol Community Health

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BackgroundRetention of participants is a challenge in community-based longitudinal cohort studies. We aim to evaluate the factors associated with loss to follow-up and estimate attrition bias.MethodsData are from an ongoing cohort study, Center for cArdiometabolic Risk Reduction in South Asia (CARRS) in India (Delhi and Chennai). Multinomial logistic regression analysis was used to identify sociodemographic factors associated with partial (at least one follow-up) or no follow-up (loss to follow-up). We also examined the impact of participant attrition on the magnitude of observed associations using relative ORs (RORs) of hypertension and diabetes (prevalent cases) with baseline sociodemographic factors.ResultsThere were 12 270 CARRS cohort members enrolled in Chennai and Delhi at baseline in 2010, and subsequently six follow-ups were conducted between 2011 and 2022. The median follow-up time was 9.5 years (IQR: 9.3–9.8) and 1048 deaths occurred. Approximately 3.1% of participants had no follow-up after the baseline visit. Younger (relative risk ratio (RRR): 1.14; 1.04 to 1.24), unmarried participants (RRR: 1.75; 1.45 to 2.11) and those with low household assets (RRR: 1.63; 1.44 to 1.85) had higher odds of being lost to follow-up. The RORs of sociodemographic factors with diabetes and hypertension did not statistically differ between baseline and sixth follow-up, suggesting minimal potential for bias in inference at follow-up.ConclusionIn this representative cohort of urban Indians, we found low attrition and minimal bias due to the loss to follow-up. Our cohort’s inconsistent participation bias shows our retention strategies like open communication, providing health profiles, etc have potential benefits.

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Strategies to Enhance Retention in a Cohort Study Among Adults of Turkish Descent Living in Berlin

Cited by 3 publications

References 40 publications

Investigating people’s attitudes towards participating in longitudinal health research: an intersectionality-informed perspective

Investigating people’s attitudes towards participating in longitudinal health research: an intersectionality-informed perspective

The limitations of large-scale volunteer databases to address inequalities and global challenges in health and aging

Evaluating bias with loss to follow-up in a community-based cohort: empirical investigation from the CARRS Study

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