Development of an Inclusive Demographic Survey for Clinical Care and Research

There is a need to accurately capture family demographic information to ensure appropriate delivery of services, optimize patient experiences, and examine health disparities; however, we lack a standardized and inclusive approach to collect demographic data. Our objective was to design a set of inclusive survey items for common demographic categories that can be used for clinical care and research.

In this prospective, mixed-methods study, we used a rigorous survey design approach to conduct a literature review, seek expert validation, and perform cognitive pretesting with families between October 2021 and September 2023 to iteratively develop an inclusive demographic survey. Survey iterations were made based on triangulation of rankings for each candidate survey item and content analysis of feedback from content experts and families.

We incorporated 21 sources from the literature review, feedback from 7 content experts, and cognitive pretesting data from 57 patient and family respondents from diverse backgrounds. We developed a final survey assessing the following categories: gender identity and sex (2 items), race and ethnicity identity (1 item), language for care (4 items), household education (1 item), and household socioeconomic status (1 item). The final survey captures nuances in demographic information (eg, racial and ethnic identity) within a parsimonious survey structure and optimizes the use of respectful, inclusive language.

We used a rigorous, family-centered survey design approach to develop a novel inclusive demographic survey, providing a standardized tool for comprehensive and accurate demographic data collection in clinical care and research.