The Lobular Breast Cancer Alliance presented a research poster at the San Antonio Breast Cancer Symposium (SABCS) December 11, 2019 sharing the findings of a survey of its website users. SABCS is attended by thousands of breast cancer providers and researchers from around the world.
The poster entitled Survey of LBCA-Sponsored Website Users Confirms Value, Identifies Unmet Information Needs of Patients highlights the information gap patients face when making decisions with their providers about their treatment and self-care, indicates high levels of interest in additional ILC research and confirms the value of having a dedicated source of research-based information about lobular breast cancer.
Survey Results, Conclusion and Future Directions
The LBCA is driving awareness about lobular breast cancer by sponsoring a website providing research-based information about ILC.
The majority of visitors (84%) found the information they sought on LBCA’s website. LBCA will continue to provide a central online resource focused on lobular breast cancer to educate the community and enable patients to advocate for their self-care.
LBCA website visitors are primarily patients or former patients. Most are diagnosed early stage, and 71.5% are 46 – 65 years old. 25% of responders to the survey live outside of the United States.
There were numerous actionable suggestions for navigation improvements and content suggestions that LBCA can or has already implemented.
Information Needs
In an open-ended question, users most frequently reported frustration when seeking quality in-depth information about ILC and best courses of treatment and in the level of knowledge about ILC among providers.
“My Doctor” ranked 4th on a list of resources patients turned to for information about their disease behind online information sources.
The absence of clear treatment guidelines for ILC and gaps or perceived gaps in provider knowledge highlights the root problem that lobular breast cancer is under-researched.  LBCA will continue to advocate for and support additional studies and clinical trials that can refine and tailor the treatment guidelines for lobular breast cancer to address the differences in this disease.
While LBCA does not recommend specific providers or cancer institutions for many reasons, it strongly recommends that patients with any questions about their care consider second opinions at NCI designated cancer centers where providers see many patients with ILC and have access to the latest research.
LBCA will also integrate more research findings onto its website, and has developed and will continue to build a searchable ILC research publications library, share information from breast cancer conferences, host educational forums and events, and house and share these educational resources on the website. LBCA will continue to send lobular advocates to research conferences and meetings to represent patients with lobular breast cancer and share patient needs and perspectives on living with this disease.
About the Survey
LBCA conducted an anonymous survey on its website LobularBreastCancer.org, by email and on social media in May 1 – June 3, 2019. 950 website users completed the survey. The goal of the survey was to determine the value of the website and identify potential ways to improve it. Specific objectives:
- Understand who was visiting the site
- Identify the information sought by visitors
- Obtain feedback on the usefulness of the content and navigation
- Seek input on additional content and informational needs of patients
The Lobular Breast Cancer Alliance website is maintained by patient advocate volunteers and reviewed by LBCA’s Scientific Advisory Board. For more information, contact the Lobular Breast Cancer Alliance at info@lobularbreastcancer.org
