Practice of reporting social characteristics when describing representativeness of epidemiological cohort studies - A rationale for an intersectional perspective

Abstract

Representativeness has been defined as the degree of similarity of a study population compared to an external population. To characterize a study population, both health-related and social or demographic features should be considered according to current guidelines. However, little guidance is given on how to describe social complexity of study populations when aiming to conclude on representativeness. We argue that sociological concepts should inform characterizations of study populations in order to increase credibility of conclusions on representativeness. The concept of intersectionality suggests to conceptualize social location as a combination of characteristics such as sex/gender and ethnicity instead of focusing on each feature independently. To contextualize advantages of integrating the concept of intersectionality when investigating representativeness, we reviewed publications that described the baseline population of selected epidemiological cohort studies. Information on the applied methods to characterize the study population was extracted, as well as reported social characteristics. Nearly all reviewed studies reported descriptive statistics of the baseline population and response proportions. In most publications, study populations were characterized according to place of residence, age and sex/gender while other social characteristics were reported irregularly. Differential patterns of representativeness were revealed in analyses that stratified social characteristics by sex/gender or age. Furthermore, the included studies did not explicitly state the theoretical approach that underlay their description of the study population. Intersectionality might be particularly fruitful when applied to descriptions of representativeness, because this concept provides an understanding of social location that has been developed based on situated experiences of people at the intersection of multiple axes of social power relations. An intersectional perspective, hence, contributes to approximate social complexity of study populations and might contribute to increase validity of conclusions on representativeness of population-based studies.

Keywords: Cohort studies; Intersectionality; NIH, National Institutes of Health; Representativeness; SES, Socio-economic status; Social location; Study participation; UK, United Kingdom; USA, United States of America.

Fig. 1

Summary of PROGRESS plus groups used to describe the study population and their mutual stratification in the included cohort studies.