Defense Date


Document Type


Degree Name

Doctor of Philosophy


Social and Behavioral Health

First Advisor

Robin Matsuyama, PhD




By Dana L. Ladd, Ph.D., MS, SLIS

BACKGROUND: Approximately 25% of all cancers diagnosed are considered rare. Patients may face many significant challenges including difficulty obtaining information about their rare conditions. Patients often have high information needs and may seek desired information from a variety of informational sources including healthcare providers, media, print, government and non-profit organizations in order to meet their needs. Accessing reliable consumer-level information can be challenging and often information needs are unmet. Dissatisfaction with health information provision can result in negative health-related outcomes and factors including decreased health-related quality of life.

METHOD: This cross-sectional design study used validated measures to assess the information needs, information sources, information satisfaction, and health-related quality of life of patients diagnosed with rare cancers (n=113). Adult patients at the VCU Health Massey Cancer Center who had been diagnosed with a rare cancer in the past 12 months were contacted via mail survey. Descriptive statistics were used to summarize patients’ information need and information received levels. Unmet needs were analyzed using a two-sample T-test. Chi-square tests were used to analyze information needs and received by demographics for gender and race and logistic regression analysis was used for age. Descriptive statistics summarized information sources used and preferred. Finally, descriptive statistics were used to summarize information satisfaction. The relationship between information satisfaction and health-related quality of life was assessed using a two-sample T-test.

RESULTS: Study participants had high information needs, particularly for information about disease, medical tests, and treatment. Though patients also reported receiving information at high levels, 21 participants (18.9%) reported being unsatisfied with information provision. Unmet needs were found for information about disease and on the item level for information about causes of cancer, whether their cancer was under control, expected benefits of treatment, and financial, insurance, and work-related information. Although participants reported preferring information from their healthcare providers, they most commonly sought information from the Internet more than any other source.

CONCLUSION: By identifying patients’ information needs and sources, this study fills an important gap in the information needs and sources literature of patients diagnosed with rare cancers. Identification of these needs allows healthcare providers to tailor information provision to more effectively meet patients’ information needs.


© The Author

Is Part Of

VCU University Archives

Is Part Of

VCU Theses and Dissertations

Date of Submission