A Pilot Study Determining Comprehension and the Acceptability of a Cancer Research Study Website for Cancer Patients and Caregivers

• Published in: Journal of cancer education Vol. 35; no. 3; pp. 589 - 598
• Main Authors: Flood-Grady, Elizabeth, Neil, Jordan M., Paige, Samantha R., Lee, Donghee, Damiani, Rachel E., Hough, Deaven, Savitsky, Zack, George, Thomas J., Krieger, Janice L.
• Format: Journal Article
• Language: English
• Published: New York Springer US 01.06.2020; Springer Nature B.V
• Subjects: Biomedical and Life Sciences; Biomedical Research - statistics & numerical data; Biomedicine; Cancer; Cancer Research; Caregivers; Caregivers - psychology; Comprehension; Credibility; Cross-Sectional Studies; Female; Humans; Internet - statistics & numerical data; Male; Medical research; Middle Aged; Neoplasms - diagnosis; Neoplasms - therapy; Patient Acceptance of Health Care - psychology; Patient Participation - statistics & numerical data; Patients; Pharmacology/Toxicology; Pilot Projects; Websites; Online treatment decision-aids; Communication interventions; Cancer clinical trial comprehension; Cancer patients and caregivers
• ISSN: 0885-8195; 1543-0154
• DOI: 10.1007/s13187-019-01501-w

The purpose of this pilot study was to determine if a cancer research study website increased comprehension among patients and caregivers and if website evaluations differed across patient and caregiver groups. Participants ( N  = 200) were cancer patients and caregivers living in the USA. Comprehension was determined by the number of correct responses to a series of questions about key characteristics of cancer research studies that are frequently unknown or misinterpreted by patients and/or caregivers. Quantitative and qualitative analyses were conducted to determine participant evaluations across four domains: perceived website credibility, perceived website attractiveness, perceived information effectiveness, and perceived information clarity. Patients and caregivers perceived the website as highly credible and attractive and the information as both easy to understand and moderately effective in helping them make decisions about CCTs. Qualitative feedback underscores the importance of testimonials to website credibility. However, the range in the number of correct responses of certain items across participants coupled with discrepancies in comprehension between patients and caregivers suggests the need for stronger mechanisms evaluating knowledge outcomes.