Utility of linking survey and registry data to evaluate interventions and policies to address disparities in breast cancer survivorship among young women. (October 2021)

• Record Type: Journal Article
• Authors: Subramanian, Sujha; Jones, Madeleine; Tangka, Florence K.L.; Edwards, Patrick; Flanigan, Tim; Kaganova, Jenya; Smith, Kevin; Fairley, Temeika; Hawkins, Nikki A.; Rodriguez, Juan L.; Guy, Gery P.; Thomas, Cheryll C.
• Is Part Of: Evaluation and program planning. Volume 88(2021)
• Publication Date: 2021-10
• Subjects: Breast cancer -- State cancer registry -- Survey data -- Race/ethnicity -- Insurance status -- Late-stage diagnosis -- Multifactorial research; Health planning -- Periodicals; Medical care -- Evaluation -- Periodicals; 362.1068
• DOI: 10.1016/j.evalprogplan.2021.101967
• Languages: English
• ISSNs: 0149-7189

Abstract

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.