A VCU librarian’s doctoral research fills a significant gap in the medical and library literature about the information needs of patients with rare cancers.

Associate Professor Dana L. Ladd is the Community Health Education Center librarian and is therefore in a unique position to glean first hand what patients need to know.

Ladd runs  The Community Health Education Center (CHEC) in the Gateway building of VCU Health.  Each month, some 1,300 people visit this unique patient library located in a public university and a teaching hospital. Ladd leads a team consisting of one library assistant and trained volunteers (pictured above) who help patients and family members find reliable health information written in easy-to-understand language. Visitors to this patient library find consumer-level information–books, magazines, videos–in a variety of formats. Materials are not circulated but may be used in the center. CHEC also works with health care providers and patient advocates who request copies of materials to share with patients. A robust website provides vetted information on various health matters, conditions and diseases. Organized, written and fact-checked by medical librarians, online resources are free and available to all.   

Questions from rare disease patients led her to her research topic for her dissertation. She earned her Ph.D. in Social and Behavioral Science at VCU in 2016. More about her research:

Your dissertation  is about information needs and information sources of patients diagnosed with rare cancers. What led to your interest in this topic? And, speaking in lay terms, what is a “rare” cancer?

I knew I wanted to focus on cancer patients’ information needs. I was reading cancer information needs literature and saw an article expressing how information needs of the rare cancer population need to be explored.  I have worked with many patients in CHEC with rare diseases including rare cancers and thought: “That would be an interesting topic!” I searched the literature and found nothing regarding rare cancer patients’ information needs. Patients with rare cancers have been traditionally overlooked not only in the information needs literature but rare cancers research has been underfunded and understudied compared to more common cancers.  I knew then that I needed to help fill this important gap in the rare cancer information needs literature.

In addition to researching patients with rare cancers’ specific information needs, I also wanted to examine if their needs were met and also wanted to find out from which sources patients sought, received, and preferred receiving information about their rare cancers.  Finally, I also examined if there was a relationship between information satisfaction and health-related quality of life of patients diagnosed with rare cancers.  

Rare cancer is difficult to define. There are many definitions of rare cancers that have been developed by various rare cancer organizations. The general definition used for defining rare diseases in the United States is that it affects fewer than 200,000 people.  

While your study explored these patients’ information needs, were you also–as a librarian and expert researcher–able to identify resources/information for these patients?

I believe meeting the information needs of this population is very important. Dr. Derek Raghavan, Director of the Levine Institute at Carolinas HealthCare System asked me to write a chapter for the Textbook of Uncommon Cancer. In it, not only do I explain the patient with rare cancers’ information needs and sources used, I also provide information about how providers can find consumer-level information for their patients and provide an annotated list of sites that contain information about rare cancers. Oncologists can use this list to find information for their patients or direct them to credible sites. So, yes, through my work in exploration of information needs I was also identified resources and information that patients with rare cancers can use to find information.  Unfortunately, though, for many rare cancers there is little consumer-level information available.

How do you envision that VCU, with its Massey Cancer Center, and VCU Hospitals patients might benefit from your knowledge of information needs about rare cancers? Will you be (or have you) added information to CHEC’s online resources?

I believe this study will help us be able to tailor information to this population. Additionally, as I stated above, the book chapter that came out of the study, also provided an opportunity for me to identify rare cancer websites. I would like to also create an online guide for CHEC that organizes rare disease information resources for patients.

These patients would prefer to receive information directly from their health care providers. This avenue is not always traveled. The second primary resource for these patients is Internet research. In the conclusion of your paper, you seem to suggest that a government-supported rare cancers online portal of some sort would go a long way toward filling the information gaps for these patients. Could you elaborate on your thinking?

Patients are using the Internet to search for information about their rare cancers and they are making healthcare decisions based upon this information. Because of this, patients should be directed to reliable sources of information. Unfortunately, for a lot of these rare cancers, there is little consumer-level information available online. It would be great to have a  freely available, credible online resource to which providers could direct their patients.

What is something you discovered during your research that was particularly unexpected?

I was surprised to learn that males in the study had higher reported information needs than the females. This deviated from the typical literature and was contrary to the needs of patients with more common cancer. On the flip side, women reported higher degrees of dissatisfaction with the information they received. My explanation for why males had greater reported information needs than females is that possibly males may have perceived a higher risk or threat due to the rarity of their cancer and thus were been more motivated to find more information about it. (In Johnson’s Comprehensive Model of Cancer Information Seeking, perceived risk is a motivational factor for seeking health information.)

Public Relations Intern Ariell Branson conducted this interview.