Is internet information adequate to facilitate surgical decision-making in familial adenomatous polyposis?

被引:23
作者
Neuman, Heather B. [1 ,2 ]
Cabral, Cynthia [2 ]
Charlson, Mary E. [2 ]
Temple, Larissa K. [1 ]
机构
[1] Mem Sloan Kettering Canc Ctr, Dept Surg, Colorectal Serv, New York, NY 10021 USA
[2] Cornell Univ, Weill Med Coll, New York, NY USA
基金
美国医疗保健研究与质量局;
关键词
familial adenomatous polyposis; internet; decision support; information;
D O I
10.1007/s10350-007-9036-z
中图分类号
R57 [消化系及腹部疾病];
学科分类号
摘要
PURPOSE: Prophylactic surgery decisions are difficult. Supplemental information improves patients' knowledge, promoting active participation in decision-making. Our objective was to examine internet information regarding prophylactic surgery for familial adenomatous polyposis to determine its adequacy in facilitating patient participation in surgical decision-making. METHODS: We searched the internet for information on surgery for familial adenomatous polyposis, using an intentionally simple strategy to represent patients' searches. We examined the first 50 sites from each search, assessing each for content by using predefined criteria. Every site was evaluated by two investigators (kappa 0.71) by using the DISCERN criteria, a tool for evaluating quality of health information. Search-efficiency was calculated. RESULTS: Searches revealed 307,138 "hits"; 20 sites met inclusion criteria. GOOGLE (TM) demonstrated the highest search-efficiency (28 percent). Sites were maintained by general health pages (35 percent), hospitals (30 percent), professional organizations (15 percent), familial adenomatous polyposis registries (10 percent), and government (10 percent). Only 40 percent had been developed and/or updated within two years. Most included basic information regarding risk, symptoms, diagnosis, as well as discussion of familial adenomatous polyposis-associated diseases and surveillance (80-100 percent). Although 90 percent of sites presented surgical treatment options, only 60 percent provided details. Few provided information regarding postoperative bowel function (40 percent), sexual function (20 percent), or fertility (5 percent). Seven (35 percent) were identified as being of "good/excellent" quality. Only four were patient-oriented; variable information was provided. CONCLUSIONS: Internet information regarding surgical treatment of familial adenomatous polyposis is sparse, and insufficient to support active patient participation in decision-making. Despite the time and financial commitment required, development of high-quality internet resources may be justified given the lack of adequate patient-oriented information currently available.
引用
收藏
页码:2135 / 2141
页数:7
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