Principles of Researching Health Disparities in Longitudinal Cohort Studies Enrolling Children

Abstract

Health disparities are defined on the basis of specific populations that, when compared to the general population, have a significant disparity on the rate of disease incidence, prevalence, morbidity, mortality, or survival. People that experience health disparities can be defined by multiple criteria. As the diversity of the United States broadens and increases, research on the origins and causes of health disparities becomes more important to support a healthy general population. Children are particularly sensitive to and vulnerable to health disparities due to the potentially life long consequences of events during periods of critical organ, intellectual and social development. The concept of health justice whereby each individual has the opportunity to realize their full health potential can only be realized with proper understanding and relevant data to frame practice, policy and actions. The National Children's Study (NCS) was a longitudinal birth cohort study designed to incorporate the principles of the Federal Collaboration on Health Disparities Research in consultation with subject matter experts, community representatives, and ongoing evaluation to ensure high quality and relevant data on factors that impact health outcomes. The NCS developed and tested a model of enrolling a diverse population, capturing and integrating data using a life course framework, constructing individual profiles, then aggregating individuals into groups based on profiles and outcomes. This approach is applicable to other longitudinal cohort studies.

Keywords: child health; disparities health; epidemiology; health justice; longitudinal studies.

Figure 1

Model for documenting health disparities based on enrolling for diversity. The work flow to enroll into a study a diverse population so that sufficient numbers of potentially vulnerable individuals are included. From a diverse study population, the opportunity to capture information, identify individuals, document disparities, and assemble and analyze groups follows.

Figure 2

Relationship of NCS scientific goals to measurement domains. The scientific goals are summarized in the box on the upper right and the mandated outcomes are on the box on the upper left. In the middle table are examples of assessment domains with examples of sub domains that map to specific instruments.