The availability of self-reported, real-world data is important to understanding the effect that disease has on the population at large. The Internet has served as a forum to make gathering such information easy and accessible.
The Health of Women (HOW) Study was a collection of cross-sectional, web-based modules designed to survey a large number of Internet participants with and without a diagnosis of BC. The HOW Study was a collaboration between the Dr. Susan Love Research Foundation and the City of Hope. Its purpose was to assess potential risk factors for BC and to gather information related to BC diagnosis, treatment, and the development of adverse sequalae. The study, which ran from 2009 when it was beta-tested to 2019 when enrollment was closed, was one of the first research initiatives to use a large-scale, web-based approach.
It consisted of six independent, web-based modules and employed an adaptive design. Five of the modules were designed to be completed by persons either with or without a BC diagnosis; the sixth module was to be completed by BC survivors.
The modules consisted of information related to an overview of the participant's health (i.e., sociodemographic information, reproductive health history, current health, health-limiting activities, and tobacco and alcohol use); personal and family health history (i.e., personal diagnoses and treatment, screening practices, family history); health, weight, and exercise information (i.e., general health, sleep, weight and weight fluctuations, physical activity, and medication use); environmental exposures (i.e., personal care, product use, hobbies, and passive smoking exposure); and quality of life (i.e., BC diagnosis and treatment, chronic conditions, treatment-related symptoms, mental health, physical functioning, patient provider communication, social network, and finances and occupation).
If a participant indicated that they had had a diagnosis of BC, they were invited to complete Module 6 entitled "My Breast Cancer." This module asked about primary BC diagnosis, treatment, local recurrence, and metastatic treatment, if applicable.
The study was opened to participants aged 18 years and older with access to the Internet. The first module was completed by 42,540 participants, of whom 31.3% reported that they had a history of BC. As for the other modules, 22,540 completed Module 2, 17,026 completed Module 3, 13,979 completed Module 4, and 11,570 completed Module 5. Module 6, which was specifically designed to be completed by BC survivors, had 12,482 participants reporting on their primary BC diagnosis with up to 3,525 reporting on treatment for metastatic disease.
Study participants in general were primarily non-Hispanic whites (94.3%), female (99.5%), married (74.1%), college educated (73.2%), postmenopausal (91.1%), had children (68.8%), and reported breastfeeding their children (56.0%). Participants with a history of BC were significantly older, were more educated, were more likely to have children, were less likely to have breastfed their children or to have used hormone replacement therapy, reported poorer health status, and had more difficulty with activities of daily living (e.g., climbing a flight of stairs, walking one block, bathing, dressing) compared with the general initiative population. The majority of this latter population was diagnosed with BC at age 40 years or older, had stage I or II BC, and were treated with surgery (98.8%), radiation (64.8%), and/or chemotherapy (62.3%).
Despite the fact that this innovative framework was able to collect large amounts of epidemiological data in an efficient and minimally invasive way, the findings may be limited by selection bias, unknown source population, minimal availability of underrepresented and underserved populations, self-reported data that may be inaccurate, limited representation of patients with advanced BC, and that this only represented a convenience sample. These shortcomings limit generalizing these findings to the general population.
A unique feature of this project was that deidentified HOW Study data are available to public health researchers, clinicians, and BC survivors. For more information visit this link.
Pharmacists involved in population health initiatives may find this information useful to help better understand the population that they serve.
The content contained in this article is for informational purposes only. The content is not intended to be a substitute for professional advice. Reliance on any information provided in this article is solely at your own risk.
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