Clinical Support

Paper: Research Abstract

The Information Sources and Preferences of Patients Diagnosed with Rare Cancers

Sunday, May 5
5:35 PM - 5:50 PM
Room: Columbus CD (East Tower, Ballroom/Gold Level)

Objectives : Patients diagnosed with rare cancers face many challenges including difficulty finding reliable consumer health information. Little research exists regarding the information sources used and source preference of patients with rare cancers. The research questions are:
What sources do patients use to find information about rare cancers?
What sources do patients prefer when seeking information about their rare cancers?

Methods : This cross-sectional design study used validated measures to assess the information sources and preferences of patients diagnosed with rare cancers (n=113). Patients were contacted via mailed survey following the Tailored Design Method. Eligible patients were those who were 18 years and older and had been diagnosed with rare cancers of any type or stage being treated at a large National Cancer Institute (NCI) designated cancer center in the past 12 months. Survey questions were taken from the Health Information and National Trends Survey and assessed patients’ use and and patients' source preferences of books; brochures and pamphlets; cancer organizations; family, friends, and coworkers; doctors and healthcare providers; Internet; library; magazines; newspapers; telephone information number; complementary, alternative, or unconventional practitioner; and other sources.

Results : A total of 199 patients were identified as having a rare cancer and were sent a mailed survey. Of those, 113 surveys were returned resulting in a 56.7% overall response rate. Nearly all (93.8%) reported searching for health information from any source. Participants reported preferring information from their health care provider (80.5%); however, participants reported using the Internet (80.9%) over all other sources of health information.

Conclusions : This study fills an important gap in the rare cancer information sources literature. Identification of source use and preference is important because patients are reporting that they are not receiving information from their preferred source of information but are turning to the Internet to meet their information needs. Healthcare providers and information professionals need to be able to direct patients to reliable sources consumer-oriented websites for information about their rare cancers.


Dana L. Ladd, AHIP

Community Health Education Center Librarian
Tompkins-McCaw Library for the Health Sciences
Lanexa, Virginia

Dana L. Ladd MS, Ph.D, AHIP has over nineteen years of experience as a librarian and is currently an associate professor on the faculty at the Tompkins-McCaw Library for the Health Sciences and is the Community Health Education Center Librarian.
At the Community Health Education Center, Dr. Ladd manages the daily operations of the library, supervises and trains staff, provides consumer health information services for patients, their family members, and the public, and teaches health information classes. She also plans and coordinates health and wellness events and presentations and coordinates the center’s participation in local and community health fairs.
Dr. Ladd earned her doctorate degree in Social and Behavioral Science from Virginia Commonwealth University School of Medicine. Her dissertation focused on the information needs and information sources of patients diagnosed with rare cancers. She received her MS in Information Science from the University of Tennessee and Specialist Degree in Library and Information Science from the University of South Carolina where she specialized in health sciences and consumer health information.
Ladd has an extensive record of scholarship and most notably co-authored “A Medical Library Association Guide to Diabetes Information and Resources.” The book received a Library Journal Starred review. She also authored several journal articles and a book chapter titled, “What Patients Need to Know: Information Needs and Sources of Patients with Rare Cancer” in the Textbook of Uncommon Cancer. She has presented at state, regional, and national library conferences.


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The Information Sources and Preferences of Patients Diagnosed with Rare Cancers

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