Abstract P1-16-02: Survey of Lobular Breast Cancer Alliance website users confirms value and identifies unmet information needs

Abstract

Introduction The Lobular Breast Cancer Alliance (LBCA) was founded in 2017 by patient advocates attending the First International Invasive Lobular Breast Cancer Symposium sponsored by the University of Pittsburgh. The conference underscored that invasive lobular breast cancer (ILC) is an understudied unique subtype of breast cancer requiring refinements in treatments. ILC is the sixth most frequently diagnosed cancer of women and the second most common histological subtype of breast cancer with more than 39,000 patients diagnosed a year in the U.S. LBCA’s goals are to advance research and educate about ILC. Challenges An early goal of LBCA was to address the absence of a central source of quality information about lobular breast cancer. A website, lobularbreastcancer.org, launched December, 2017 with over 98,000 hits to-date. It is maintained by patient-advocate volunteers with content reviewed by LBCA’s Scientific Advisory Board. Methods A survey of users was conducted from May 1 to June 3, 2019 to determine value of the website to users and identify potential ways to improve it. Specific goals were: Understand who was visiting the site, identify the information sought, obtain feedback on the usefulness of content, and seek input on content and navigation. Results The online survey was taken by 950 participants. Current or former patients treated for lobular breast cancer comprised 94.7% of respondents. 75.8% were from U.S. Health professionals/researchers represented 3.04% of responders. Patients ranged in age from under 35 to over 75 years; 71.5% were 46-65 years. Most (66.5%) had Stage 1-2 disease at time of diagnosis; 7% reported de novo metastatic disease. An additional 9% reported a metastatic recurrence. LBCA (43.8%), other cancer organizations (43.2%),and Internet searches (38.3%) were the most frequently used sources for information about lobular breast cancer; doctor/health care provider ranked fourth (35.3%). The survey confirmed that LBCA goals for the website were aligned with the reason responders visited - i.e., general information (33%), research/clinical trials (21.9%) and treatment information (17.8%). Most consulted the site 2-4 times (46%), 11% visited more than 10 times. Nearly all responders (83.7%) found the information they were seeking, and (45.4%) agreed that the LBCA website provided information they could not find elsewhere. There were 249 participants who responded to an open ended question with 273 recommendations for the site. The largest category of requests (17%) was for more frequent updates of research and treatment guidelines; requests for a list of providers with expertise in treating ILC patients and for LBCA to provide additional education about ILC to MDs/clinicians ranked second and third (11%). Conclusions LBCA is driving increased awareness of lobular breast cancer by sponsoring a website devoted to providing research-based information about lobular breast cancer. There were a number of actionable suggestions regarding organization and navigation of the LBCA website. Results confirmed that the LBCA goals for the website are aligned with the reason responders visited. Primarily, users searched for general information about ILC (33%), research/clinical trials (21.9%) and treatment information (17.8%). The need for a central online source for information about lobular breast cancer was confirmed by findings that the most frequently used sources of information about lobular were the LBCA, other cancer organizations and Internet searches. Doctors/health care providers ranked fourth as a source of information about lobular disease. Many responders wanted the website to list ILC treatment specialists, address the gap in provider expertise about ILC detection and treatment, and report research and treatment guidelines specifically for ILC. Citation Format: Lori Petitti, Janice Axelrod, Margaret Campbell-Kotler, Julia Levine, Flora Migyanka, Elizabeth Viggiano, Steffi Oesterreich, Leigh Pate. Survey of Lobular Breast Cancer Alliance website users confirms value and identifies unmet information needs [abstract]. In: Proceedings of the 2019 San Antonio Breast Cancer Symposium; 2019 Dec 10-14; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2020;80(4 Suppl):Abstract nr P1-16-02.

How Researchers, Clinicians and Patient Advocates Can Accelerate Lobular Breast Cancer Research

“…Currently, patients frequently turn to outside sources such as the internet and social media groups for information about ILC and their care. In a survey of 950 LBCA website users, respondents (95% current or former patients with ILC) ranked their doctor fourth when asked for their top three sources of information about ILC [32].…”