C. Zhang1, A. Yang1, A. Halverson1 1Northwestern University,Chicago, IL, USA
Introduction:
Decision making regarding surgery for pancreatic cancer may be difficult for patients as surgery can improve survival but can also negatively impact quality of life. In order to more actively participate in decision making, patients often seek information on the Internet. The aim of this project was to assess the quality of publicly available online information regarding surgery for pancreatic cancer.
Methods:
This study was a cross-sectional survey of patient-centered websites that address surgery for pancreatic cancer. Two search engines (Google, Bing) were queried with the terms “pancreatic cancer treatment”, “pancreatic cancer surgery”, “Whipple procedure”, and “pancreaticoduodenectomy” to identify websites of interest. Each website was evaluated using the DISCERN instrument (www.discern.org.uk), a validated questionnaire developed to analyze written consumer health information on treatment choices. An additional questionnaire was used to evaluate website content specifically for pancreatic cancer surgical treatment. Two healthcare providers (surgeon, medical student) reviewed each website independently and inter-rater reliability (IRR) was calculated. In addition, one pancreatic cancer patient and one family member analyzed a randomly selected subgroup of study websites using the DISCERN instrument.
Results:
We identified 93 distinct websites; 45 met inclusion criteria. Website affiliations included: health care organizations (44%), non-profit organizations (22%), open-access general information (22%), and government/professional websites (11%). Using DISCERN, the two healthcare providers identified that only 24% of the websites had clear aims, 31% had identifiable references, and 36% noted the publication date (Figure). Overall, 4 websites (9%) were identified as excellent, and nine (20%) were of poor quality. In regard to pancreatic cancer surgery, 62% of websites discussed postoperative complications, 56% addressed quality-of-life (QOL) issues, and 53% acknowledged the surgery volume-outcome relationship. IRR was 0.75 for the 2 professional assessors on the overall rating. DISCERN assessment by patient/family evaluators demonstrated 83% agreement with the results by medical professionals. Major areas of disagreement included QOL and website bias.
Conclusion:
The quality of patient-centered online information on pancreatic cancer treatment is highly variable. Websites frequently lack updated information and references, and often do not provide adequate information for patients to make well-informed treatment decisions. However, patients and family members demonstrated the ability to learn strategies to critically evaluate online health information.
