Information needs and visitors' experience of an Internet expert forum on infertility

Abstract

Background: Patients increasingly use health portals and Web-based expert forums (ask-the-doctor services), but little is known about the specific needs of Internet users visiting such websites, the nature of their requests, or how satisfied they are with Internet health experts. Objective: The aim of this study was to analyze the information requests of (mostly female) patients visiting an Internet expert forum on involuntary childlessness and their satisfaction with the experts' feedback. Methods: We posted an electronic questionnaire on a website hosting an expert forum on involuntary childlessness. The questionnaire was "activated" whenever a visitor sent a question or request to the expert forum. The survey focused on the reasons for visiting the expert forum and whether the visitors were satisfied with the experts' answers to previously posted questions. The free-text questions of visitors who answered the survey were analyzed using Atlas-ti, a software program for qualitative data analysis. Results: Over a period of 6 months, 513 out of 6 10 visitors (84%) answered the questionnaire. The majority of respondents (65.5%) expected general information about involuntary childlessness, conception, or an evaluation of drugs. Others were concerned about their actual treatment (40.6%) and therapeutic options (28.8%). Out of 225 respondents who had previously contacted the forum, 223 had received an answer, and 123 (55.2%) were satisfied with the experts' answers. About half (105/223) of those users who had previously received an answer from the expert forum stated that they had discussed it with their own doctor. More of these users were satisfied with their subsequent care in fertility clinics than users who did not talk to their doctor about their Internet activities (93.9% vs 76. 1%; P = .015). According to the qualitative analysis, many requests (n = 194) were more or less trivial, especially those for information on basic aspects of reproduction. More than one-third of visitors (n = 199) sent detailed results of diagnostic tests and asked for a first or second opinion. Requests to the expert forum were also sent in order to obtain emotional support (17%) or to complain about a doctor (15%). Conclusions: Visitors who sent their laboratory findings to receive a thorough evaluation or a second opinion had a good command of the opportunities that an expert forum offers. One important expectation of the forum was emotional support, indicating psychological needs that were not met by medical providers. Future websites must find a compromise in order to protect experts from being overwhelmed by general, nonspecific requests while supporting patients with individualized answers.