Utility of linking survey and registry data to evaluate interventions and policies to address disparities in breast cancer survivorship among young women

https://doi.org/10.1016/j.evalprogplan.2021.101967Get rights and content

Highlights

  • Survey & registry data displayed generally high agreement for demographic variables.

  • Lower agreement for some treatment/hormone receptor variables for nonwhites.

  • Hormone receptor status had lowest concordance between survey & registry data.

  • Several variables were only available from the survey data.

  • Survey data provide important information on quality of care & financial impacts.

Abstract

Purpose

There is limited research linking data sources to evaluate the multifactorial impacts on the quality of treatment received and financial burden among young women with breast cancer. To address this gap and support future evaluation efforts, we examined the utility of combining patient survey and cancer registry data.

Patient and Methods

We administered a survey to women, aged 18–39 years, with breast cancer from four U.S. states. We conducted a systematic response-rate analysis and evaluated differences between racial groups. Survey responses were linked with cancer registry data to assess whether surveys could reliably supplement registry data.

Results

A total of 830 women completed the survey for a response rate of 28.4 %. Blacks and Asian/Pacific Islanders were half as likely to respond as white women. Concordance between survey and registry data was high for demographic variables (Cohen’s kappa [k]: 0.879 to 0.949), moderate to high for treatments received (k: 0.467 to 0.854), and low for hormone receptor status (k: 0.167 to 0.553). Survey items related to insurance status, employment, and symptoms revealed racial differences.

Conclusion

Cancer registry data, supplemented by patient surveys, can provide a broader understanding of the quality of care and financial impacts of breast cancer among young women.

Introduction

In 2017, over 40,000 women living in the United States were diagnosed with breast cancer before the age of 40, and it is estimated that more than 10,500 breast cancers are diagnosed each year (American Cancer Society, 2017). Young women face unique challenges, as their cancers are often diagnosed at a later stage than breast cancers in older women, and they undergo more aggressive treatments (Ademuyiwa, Cyr, Ivanovich, & Thomas, 2016; Anders, Johnson, Litton, Phillips, & Bleyer, 2009; Johnson, Chien, & Bleyer, 2013; Rosenberg, Newman, & Partridge, 2015). Currently, limited research focuses on the multifactorial causes of disparities in breast cancer outcomes among young women, such as tumor biology, access to care, quality of care, social support, and financial resources. In this manuscript, we explore opportunities to link data sources to address multifactorial drivers of health disparity.

Recent evidence suggests that, among their peers, nonwhite women are particularly disadvantaged when it comes to disease progression, prevalence, and screening. Breast cancer incidence is highest among young black women, as is the proportion of more aggressive breast cancers (Chollet-Hinton et al., 2017). Compared with non-Hispanic white women, non-Hispanic black and Hispanic women exhibit higher rates of diagnoses at later stages (Shoemaker, White, Wu, Weir, & Romieu, 2018). Although breast cancer mortality has decreased across all racial and ethnic groups over the past three decades, not all groups have experienced the same rate of decline in mortality and incidence—particularly non-Hispanic black, Hispanic, and Asian/Pacific Islander women and those younger than age 40 (Ademuyiwa et al., 2016; Anders et al., 2009; Johnson et al., 2013; Rosenberg et al., 2015).

There are many different types of breast cancer, each associated with a multitude of genetic, behavioral, and environmental factors, giving rise to the term multifactorial disease (Ritchie et al., 2001). This model provides a lens through which to view many of the disparities in health outcomes between young breast cancer survivors and older breast cancer survivors—particularly when it comes to stage at diagnosis. Disparities in breast cancer outcomes can be explained partially by tumor characteristics, but other factors, including access to care, quality of care, social support, and financial resource availability, also contribute (Anders et al., 2009; Johnson et al., 2013; Letourneau et al., 2012; Rosenberg et al., 2015). In fact, recent evidence suggests that many young breast cancer survivors experience substantial financial decline as a result of their diagnosis and treatment and must make employment decisions solely to maintain health insurance coverage (Tangka et al., 2020). Psychosomatic factors, such as stress related to breast cancer treatment, along with other disparities in breast cancer outcomes across race/ethnicity, may contribute to the productivity losses that can occur due to a breast cancer diagnosis (Ekwueme et al., 2014; Maunsell, Brisson, Dubois, Lauzier, & Fraser, 1999)

Therefore, there is a need to explore a comprehensive set of underlying factors, including racial disparities, related to outcomes differences between young and older women. A limited number of studies have used cancer registry data, claims databases, and survey responses to assess breast cancer disparities but these have not specially addressed the unique issues facing younger women (Griggs et al., 2012; Hassett et al., 2016; Jagsi et al., 2014). To address this gap in the literature, we evaluated the utility of linking patient surveys with cancer registry databases to capture multifactorial data elements that impact health outcomes and financial burden among young breast cancer patients. We report on the methodology of a survey of young breast cancer patients that was administered in four U.S. states, systematically comparing differences in responses and response rates across racial/ethnic groups. We also assess the value of conducting patient surveys to supplement information not available in cancer registry data. Furthermore, we use linked cancer registry and survey responses to evaluate completeness and concordance between the information available from both sources. The findings from this study can help guide future methodological approaches to perform comprehensive and multifactorial evaluations of interventions and policies to improve outcomes and the overall well-being of young women diagnosed with breast cancer.

Section snippets

Study cohort and data collection overview

We included women with breast cancer who were diagnosed between the ages of 18 and 39 years from four state cancer registries with relatively large minority populations to ensure adequate sample size among all races and ethnicities. The central cancer registries in California, Florida, Georgia, and North Carolina were selected because new cancer cases in these states tended to be more evenly distributed among non-Hispanic whites and other racial/ethnic groups. Women were eligible to participate

Results

In Table 1, we summarize the response rate for each of the four states in this study. Surveys were initially mailed to 3,659 young breast cancer survivors; however, 733 of these were undeliverable due to the incorrect address, outdated address, or death of the targeted respondent. Therefore, the total available sample was 2,926. In total, 830 young women completed the survey, a response rate of 28.4 %. The response rate was very similar across states, ranging from 27.9%–29.3%. Most responded

Discussion

In this study, we examined the utility of supplementing cancer registry data with survey data to assess multifactorial aspects impacting outcomes and financial toxicity among young breast cancer survivors. Survey data can serve as a rich source of information, as many more domains and concepts can be explored through self-report than through cancer registry data alone. Survey data can capture patient-reported symptoms and outcomes and key areas related to insurance status and employment, which

Ethical approval

“All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.”

Informed consent

Informed consent was obtained from all individual participants included in the study.

Statement on the welfare of animals

This article does not contain any studies with animals performed by any of the authors.

Funding

Funding support for RTI staff was provided by the Centers for Disease Control and Prevention (CDC) (Contract N0. 200-2008-27958 Task 48, to RTI International).

The findings and conclusions in this manuscript are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

CRediT authorship contribution statement

Sujha Subramanian: Conceptualization, Methodology, Validation, Formal analysis, Investigation, Resources, Data curation, Writing - original draft, Writing - review & editing, Visualization, Supervision, Project administration. Madeleine Jones: Validation, Formal analysis, Investigation, Resources, Data curation, Writing - original draft, Writing - review & editing, Visualization, Funding acquisition. Florence K.L. Tangka: Conceptualization, Methodology, Validation, Formal analysis,

Declaration of Competing Interest

The authors have no conflicts to report.

Sujha Subramanian, PhD, MA, is a Fellow in Health Economics and Policy Research at RTI International and has extensive experience performing economic burden assessments and evaluations of noncommunicable disease (NCD) screening programs both in the United States and in international settings. Over the past two decades, she has directed several program evaluations, including the assessment of the cost and effectiveness of the National Breast and Cervical Cancer Early Detection Program (NBCCEDP)

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    Florence K.L. Tangka, PhD, MS, is a health economist in the Division of Cancer Prevention and Control’s Epidemiology and Applied Research Branch. She is the principal investigator for a number of CDC cancer economics studies. Her research focuses on the economics of cancer, the economics of CDC’s National Program of Cancer Registries and Colorectal Cancer Control Program, and the use of breast and cervical cancer screening services. Dr. Tangka received her master’s from Rutgers University in agricultural economics, her doctoral degree from the University of Florida, Department of Food and Resource Economics, and completed a two-year postdoctoral fellowship in Prevention Effectiveness at CDC.

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    Tim Flanigan, MA, is a survey methodologist with more than 22 years of professional experience in survey design, questionnaire pretesting, and data management. Mr. Flanigan has experience supervising field staff, training new interviewers, field material design, database management, and data analysis. Mr. Flanigan received his Master’s in Sociology, with emphasis on Applied Social Research and Statistics, from West Virginia University, Morgantown.

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    Juan L. Rodriguez Juan Rodriguez, MPH, MS, is at the Centers for Disease Control and Prevention (CDC) in the Division of Cancer Prevention and Control. His research spans the cancer continuum, from primary cancer prevention and screening, to cancer survivorship. Mr. Rodriguez is also the Program Director for the CDC Public Health Cancer Genomics Program. His programmatic work has focused on the implementation of cancer genomics into public health settings, specifically state health departments. Mr. Rodriguez received his master’s in Behavioral Science and Health Education from Emory University.

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