Real-world data is crucial for gaining a comprehensive understanding of how diseases impact populations. The internet has become an invaluable tool for collecting this data, making it easier and more accessible than ever before. One significant initiative in this area is the Health of Women (HOW) Study, a web-based research project designed to survey a large group of participants, both with and without a Bc Diagnosis.
The HOW Study was a collaborative effort between the Dr. Susan Love Research Foundation and City of Hope. Its primary goal was to identify potential risk factors for breast cancer (BC) and to gather detailed information about bc diagnosis, treatment approaches, and the subsequent development of adverse effects. Running from its beta testing phase in 2009 until enrollment closed in 2019, the HOW Study was a pioneering effort, being among the first large-scale research projects to leverage a web-based platform for data collection.
The study employed an adaptive design, structured around six independent, web-based modules. Five of these modules were designed for completion by individuals regardless of their bc diagnosis status. The sixth module was specifically tailored for breast cancer survivors.
These modules covered a wide range of health-related information. This included an overview of the participant’s general health, encompassing sociodemographic details, reproductive health history, current health status, activities limited by health issues, and patterns of tobacco and alcohol consumption. Further modules explored personal and family health histories, detailing personal diagnoses and treatments, cancer screening practices, and family history of diseases. Other sections focused on health, weight, and exercise habits, examining general health perceptions, sleep patterns, weight and weight fluctuations, physical activity levels, and medication use. Environmental exposures were also assessed, including the use of personal care products, hobbies, exposure to passive smoking, and other environmental factors. Finally, quality of life was evaluated, taking into account aspects related to bc diagnosis and treatment, the presence of chronic conditions, treatment-related symptoms, mental health, physical functioning, patient-provider communication, social networks, and financial and occupational impacts.
Participants who indicated they had received a bc diagnosis were invited to complete Module 6, titled “My Breast Cancer.” This module delved into specifics of their primary bc diagnosis, treatment modalities received, instances of local recurrence, and treatments for metastatic disease, if applicable.
The study was open to adults aged 18 and over with internet access. An impressive 42,540 participants completed the initial module, with 31.3% of them reporting a history of breast cancer. Subsequent module completion rates were also substantial: 22,540 for Module 2, 17,026 for Module 3, 13,979 for Module 4, and 11,570 for Module 5. Module 6, dedicated to BC survivors and their bc diagnosis journey, saw 12,482 participants providing information on their primary bc diagnosis, with up to 3,525 sharing details about treatment for metastatic disease.
The study population was predominantly non-Hispanic white (94.3%), female (99.5%), married (74.1%), college-educated (73.2%), and postmenopausal (91.1%). A majority had children (68.8%) and reported breastfeeding (56.0%). Compared to the general study population, participants with a history of bc diagnosis were significantly older and more educated. They were also more likely to have children but less likely to have breastfed or used hormone replacement therapy. This group also reported poorer overall health and greater difficulty with daily activities such as climbing stairs, walking, bathing, and dressing. Most of the participants with bc diagnosis were diagnosed at age 40 or older and had stage I or II breast cancer. Common treatments included surgery (98.8%), radiation (64.8%), and chemotherapy (62.3%).
While the HOW Study’s innovative web-based approach efficiently gathered extensive epidemiological data in a minimally invasive manner, it’s important to acknowledge its limitations. These include potential selection bias due to the online recruitment method, an unknown source population, limited representation of underrepresented and underserved communities, and reliance on self-reported data which may be subject to inaccuracies. Furthermore, the study had limited representation of patients with advanced breast cancer and constituted a convenience sample, which restricts the generalizability of the findings to the broader population.
Despite these limitations, a significant strength of the HOW Study is the public availability of its de-identified data. This valuable resource is accessible to public health researchers, clinicians, and breast cancer survivors. Further details can be found at this link.
Pharmacists engaged in population health initiatives can leverage the insights from the HOW Study to better understand the populations they serve, particularly concerning bc diagnosis and related health factors.
Disclaimer: This article is intended for informational purposes only and does not constitute professional medical advice. Any reliance on the information provided is at your own risk.
