Demographic Questions for California BC Research

Institution: Cancer Prevention Institute of California
Investigator(s): Scarlett  Gomez , PhD -
Award Cycle: 2009 (Cycle 15) Grant #: 15QB-8102 Award: $430,588
Award Type: SRI Request for Qualifications-RFQ
Research Priorities
Community Impact of Breast Cancer>Disparities: eliminating the unequal burden of breast cancer



Initial Award Abstract (2009)

Developing standard survey questions for identifying and reducing disparities in breast cancer
Researchers at the Northern California Cancer Center and their collaborator at Harvard University will be working closely with scientific and community experts to develop a set of survey tools that will be used to gather data associated with breast cancer disparities more consistently. While scientists know that certain women are more likely to get breast cancer, be diagnosed with it at a late stage, receive sub-standard treatment, or die from their disease, they know less about the extent to which these problems affect some women more than others, which groups are more affected, and the reasons for these patterns. This is, in large part, because factors used to define population groups in the US are collected inconsistently. Thus, standardizing the way data are collected is a critical step in understanding breast cancer disparities and what can be done about them.

The standards for data collection that are developed through this study will help to ensure that scientists can effectively interpret and compare information they use to study breast cancer. These include factors such as an individualís race, ethnicity, birthplace, migration history, language, community characteristics, disability status, socioeconomic status, gender, and sexual orientation. Additionally, the survey tool used in this study will be translated into several major languages and reviewed and tested by a wide range of experts, making it applicable to gathering data for research within many different populations. With uniformly gathered data, scientists can more effectively compare their results regarding why and how breast cancer affects some women more than others, leading to new knowledge about how the unequal burden of breast cancer in the population can be eliminated.




Final Report (2012)

The primary objective of this project was to develop a core set of quantitative survey items on sociodemographic variables that can be included in breast cancer studies and used to gather data associated with breast cancer disparities more consistently. The standards for data collection that are developed through this study will help to ensure that scientists can effectively interpret, compare, and pool information they use to study breast cancer. These include factors, defined by CBCRP, and including race, ethnicity, birthplace, migration history, language, literacy, numeracy, community characteristics, disability status, socioeconomic status, gender, and sexual orientation.

A two-phased approach was proposed and implemented for the project. (Due to the nature of instructions for the original grant, specific aims were not proposed.) The first phase involved designing the core set of survey tools through a detailed review of the published literature, an in-person meeting with a panel of Scientific Advisors and a second meeting with a panel of Community/Advocate Advisors. The second phase of the project involved pre-testing, through cognititive interviews, then pilot-testing through interviewer- and self-administered interviews, with women who have been diagnosed with breast cancer, randomly selected from the Greater Bay Area Cancer Registry (GBACR). In addition to English, the survey items were translated and back-translated and tested in Spanish, Mandarin Chinese, Cantonese Chinese, Tagalog, and Vietnamese.

Despite experiencing barriers related to staff attrition, IRB delays, unexpectedly low study response rates, we successfully completed the originally proposed activities, and have assembled several resource documents that researchers can utilize in considering using these survey items in their research.

Even though we employed a multi-method, mixed-method approach to developing and testing these sociodemographic survey items, our experience was that the extent to which we were able to thoroughly test the items was limited. We expect that these survey items will continue to be refined through use in our own research and by other researchers. We plan to make these materials available through a website, and to encourage their use and further testing by sharing them through word of mouth with colleagues.