Purpose:The objective was to examine available Internet information regarding prophylactic colectomy for Familial Adenomatous Polyposis(FAP) to determine if it would facilitate patient participation in shared-decision-making.
Methods:We searched the internet using four commonly utilized search engines (GOOGLE, Yahoo, MSN, Ask Jeeves) for information on surgery for FAP; the search strategy was intentionally simple, using surgery for FAP as key words to represent patients' searches.
We examined the first 5 pages (50 sites) from each search and excluded sites if linked to journal articles, were not open-access, or didn't include surgical treatment information. Each site was assessed using pre-defined criteria for informational content including cancer risk, diagnosis, extra-colonic manifestations, surgical treatment options, and post-operative outcomes. The site was evaluated by two investigators (kappa 0.71) for quality using the DISCERN criteria, a tool designed for consumer use in evaluating the quality of health information. Search-efficiency was calculated for each search engine and represented the percentage of sites within the first 50 meeting inclusion criteria.
Results:The searches revealed 307,138 “hits” with 148 unique sites and 20 sites meeting inclusion criteria identified. GOOGLE demonstrated the highest search efficiency(28%), followed by MSN(24%), Yahoo(22%), and Ask Jeeves(12%). Sites were commonly maintained by general health pages(35%), hospitals(30%), professional organizations(15%), FAP registries(10%), and government(10%).
Most sites included basic information regarding colorectal cancer risk, symptoms, and diagnosis of FAP(95-100%). Additionally, most included some discussion of FAP-associated diseases and surveillance(80-90%). However, while 90% of sites presented options for surgical treatment, only 60% provided details of the procedures. Few sites provided information regarding post-operative bowel(40%) or sexual(20%) function, or fertility(5%).
Only 40% were developed or updated within the last two years. Overall, 7 sites(35%) were identified as “good/excellent” quality by DISCERN criteria. However, only 4 of these sites were considered to be patient-oriented and variable surgical and post-operative function information was provided. Additionally, these sites were not necessarily the top sites identified by the search engines and were not identified consistently across search engines.
Conclusion:The available Internet information regarding the decision for prophylactic colectomy in FAP is insufficient to facilitate patient participation in shared-decision-making. Despite the associated time and financial cost, the development of decision aids for prophylactic surgery decisions in hereditary diseases such as FAP may be justified given the lack of adequate patient-oriented information available.