Abstract
Purpose
Although improvements in breast cancer detection and treatment have significantly increased survival, important questions related to breast cancer risk, prognosis, and survivorship remain. This brief report describes the Health of Women (HOW) Study® methodology and characterizes the participants who completed the My Health Overview and My Breast Cancer modules.
Methods
The HOW Study® was a collection of cross-sectional, web-based modules designed to survey a large number of participants with and without breast cancer.
Results
A total of 42,540 participants completed the My Health Overview module, of whom 13,285 (31.2%) reported a history of breast cancer. The majority of participants were white (94.3%), female (99.5%), married (74.1%), college educated (73.2%), post-menopausal (91.1%), parous (68.8%), and reported breastfeeding their children (56.0%). A total of 11,670 participants reported a history of breast cancer in the My Breast Cancer module. The majority of survivors reported on their primary breast cancer and were diagnosed over the age of 40 years (83.5%), had either Stage I or Stage II breast cancer (63.1%), and were treated with surgery (98.8%), radiation (64.8%), and/or chemotherapy (62.3%).
Conclusions
The HOW Study® provides an innovative framework for collecting large amounts of epidemiological data in an efficient and minimally invasive way. Data are publicly available to researchers upon request.
Implications for Cancer Survivors
The HOW Study® can be leveraged to answer important questions about survivorship, and researchers are encouraged to utilize this new data source.
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Data availability
All data are available to researchers upon request.
Code availability
Coding is available upon request.
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Acknowledgements
A special thanks to Beth Slotman of Westat for her assistance. We thank Christine Taylor, Jane Sullivan-Halley, and Leslie Bernstein for their contribution to the development of the HOW Study® conceptualization.
Funding
The Health of Women Study® was supported by Dr. Susan Love Research Foundation, City of Hope Beckman Research Institute, Avon Foundation, and Keep A Breast Foundation™. The data cleaning and descriptive analysis was supported by the Division of Cancer Control and Population Sciences, National Cancer Institute, National Institutes of Health, Rockville, MD.
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Authors SL, NL, LE, and JCD made substantial contributions to the conception and design of the work. JG, PG, MO made substantial contributions to the acquisition, analysis, and interpretation of data. JG drafted the work and all authors revised it for critically important intellectual content. All authors approve this version to be published and all authors are agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
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Ethics approval and consent to participate
The questionnaire and methodology for this study was approved by the Western Institutional Review Board. Informed consent was obtained from all individual participants included in the study. The study protocol and procedures were approved by the Western Institutional Review Board.
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There are no individual data or images to obtain consent for.
Conflict of interest
The authors have no relevant financial or non-financial conflicts of interest to disclose. Data cleaning and editing was conducted by Westat under contract number HHSN261201800002B issued by the National Cancer Institute.
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Guida, J.L., Green, P., Clague-DeHart, J. et al. The Health of Women (HOW) Study®: a web-based survey of breast cancer risk factors, diagnosis, and treatment. J Cancer Surviv 17, 1445–1451 (2023). https://doi.org/10.1007/s11764-022-01180-5
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DOI: https://doi.org/10.1007/s11764-022-01180-5