Standardizing Measurement of Social and Behavioral Dimensions of Cancer Prevention and Control to Enhance Outreach and Engagement in NCI-Designated Cancer Centers

In recent years, the NCI has focused on the impact that NCI-Designated Cancer Centers have in reducing the cancer burden in their defined catchment areas (1). NCI requires that Designated Cancer Centers define and describe their catchment areas, highlight community outreach and engagement activities within their catchment areas, and identify how research conducted at Designated Cancer Centers has relevance to local catchment areas (1). However, to conduct outreach and research that truly reduces cancer burden in their defined catchment area, each cancer center must have a mechanism to assess cancer-relevant factors, needs, and opportunities in the populations they serve. While data on cancer incidence, mortality, and clinical trial enrollments at the local level are readily available, data on cancer-relevant social and behavioral factors are less routinely collected in a standardized way. In 2016, NCI funded 15 cancer center support grant supplements to support cancer centers’ abilities to better define and describe their catchment areas and needs to enhance cancer prevention and control. As part of this initiative, a working group developed standardized measures to capture demographic, social, knowledge, attitude, and behavioral factors to be included in the surveys fielded by all 15 cancer centers. In this commentary, we describe the process of selecting domains for measurement, the core measures used, and advantages of standardizing how social and behavioral factors are assessed. The survey items were streamlined enough to be incorporated into existing data collection efforts at Designated Cancer Centers and in other cancer care delivery contexts, and results can be used to inform community engagement, outreach activities, and research development.

A measurement working group of 15 researchers (Table 1) was convened to identify core measures to be fielded among all 15 sites that received P30 administrative supplements to define and describe NCI-Designated Cancer Center catchment areas. Working group members identified standard demographics, as well as key domains related to cancer prevention and control, and through an iterative process narrowed the domains to be measured to: information seeking and information access, cancer screening behaviors, cancer screening knowledge, tobacco use, cancer beliefs, awareness of cancer risk, health care access, and financial barriers to health care. The final domains were determined in an effort to balance needs of core measure brevity and inclusion of key domains of broad relevance to cancer prevention and control. All 15 funded cancer centers included additional site-specific items to capture additional domains of relevance to their defined catchment area and research priorities.

Teams of working group members with expertise in each domain reviewed national surveys to identify and nominate candidate items for inclusion in the core measures to capture each respective domain. All core measures were selected from the Health Information National Trends Survey (HINTS), the Behavioral Risk Factors Surveillance System (BRFSS), the National Health Interview Study (NHIS), or Gallop surveys. The measures working group decided to rely on these national surveys to ensure use of measures with established psychometrics, as well as to permit comparison of catchment area data to national data. As shown in Table 2, the measurement working group identified 21 measures to capture the eight cancer-relevant knowledge, attitude, and behavioral domains. The final core measures also included 13 items assessing sociodemographic characteristics (Table 3).

Understanding the needs and opportunities related to cancer prevention and control in a Designated Cancer Center's defined catchment area is critical to reduce the burden of cancer among the populations served by each cancer center. A foundational step in this process is conducting population health assessments to identify the cancer-relevant demographic, social, knowledge, attitude, and behavior factors most critical to target. Understanding more about the unique opportunities and barriers in a cancer center's catchment area can enhance the impact of research that is directly relevant to the catchment area and enhance participation in research. Measurement of demographic, social, knowledge, attitude, and behavior factors can also guide community outreach and engagement activities, and permit tailoring of such activities to meet the needs of a cancer center's defined catchment area. Within health care delivery, there is a growing focus on standardizing assessment of the social determinants of health and other factors that shape health and health care experiences (2, 3). In the context of Designated Cancer Centers, standardized measurement of factors related to cancer prevention and control has several important advantages. First, use of measures replicated from national surveys ensures that assessments are psychometrically sound and permits comparison with national datasets. Second, using uniform measures affords the opportunity for analysis of data across cancer centers and the merging of data from multiple catchment areas into a larger, comprehensive national dataset. Third, standardization of the demographic, social, knowledge, attitude, and behavior domains included in catchment area assessments can contribute to harmonization of benchmarks for such domains among cancer centers. Finally, these measures and benchmarks will allow consistent data to be collected repeatedly over time to monitor changes/improvements in catchment areas that may directly result from cancer prevention and control efforts. Ongoing evaluation of progress is essential to reducing the burden of cancer and improving population health.

No potential conflicts of interest were disclosed.

This work was supported by the NCI grants P30 CA016056-39S4 (principal investigator: C. Johnson) and P30 CA082709-17S6 (principal investigator: P. Loehrer).