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UNLABELLED - Support groups are an important therapeutic intervention for patients with chronic debilitating illnesses. Patients who are difficult to assemble in one physical location may benefit from participating in an electronic support group (ESG). ESGs for adolescents have not been evaluated, although studies have shown a benefit to adult ESGs. Our goals were to create a web-based support service for adolescents with cystic fibrosis (CF) and to qualitatively and quantitatively measure the effects that such a support site could have on patients' relationships with the clinic faculty and staff, access to and interaction with peers with CF, and understanding of CF.
METHODS - A highly interactive ESG was developed after discussions with a team of CF specialists and patients. Eighteen of 37 teenagers with CF agreed to use this site. Each patient was asked to assess his or her perceived availability of and comfort with the clinic staff and faculty, perceived support available through peers, knowledge about CF, and perceived usefulness of the Internet as a support tool.
RESULTS - Participants logged into the site an average of 4 times each month. Teens who owned home computers accessed the site somewhat more frequently than did teens who were provided with home Internet access for the study. Most activity occurred in those sections of the site that described the participants and that allowed them to socialize. Over one half of the participants e-mailed each other at least once a week, with 77% e-mailing peers at least every other week. There was no significant difference in the participants' scores on a quiz about CF at the beginning and the end of the study; however, there was a significant decrease in perceptions about their knowledge about CF. At the conclusion of the study, participants believed that they had more friends who they could relate to than they did at the beginning of the study. Clinic staff noticed an increase in references to peers among the group who were using the site. In addition, 4 of the teens expressed a desire to get together to meet each other as a result of their interactions on the web site. There was no significant change in perceptions about the perceived availability and comfort with the clinic staff and faculty, support available through peers, knowledge about CF, and the usefulness of the Internet as a support environment. Managing the project was extremely easy, with virtually no technical or procedural issues arising during the study.
CONCLUSIONS - Teenagers with a chronic disease will actively participate in an ESG. The social and expressive aspects of their involvement with this support group hold much promise.
For Interactive Patient II, a multimedia case simulation designed to improve history-taking skills, we created a new natural language interface called GRASP (General Recognition and Analysis of Sentences and Phrases) that allows students to interact with the program at a higher level of realism. Requirements included the ability to handle ambiguous word senses and to match user questions/queries to unique Canonical Phrases, which are used to identify case findings in our knowledge database. In a simulation of fifty user queries, some of which contained ambiguous words, this tool was 96% accurate in identifying concepts.
BACKGROUND - The explosion of projects utilizing the World Wide Web in the home environment offer a select group of patients a tremendous tool for information management and health-related support. However, many patients do not have ready access to the Internet in their homes. For these patients, Internet TV set-top devices may provide a low cost alternative to PC-based web browsers.
METHODS - As a part of a larger descriptive study providing adolescents with access to an on-line support group, we investigated the feasibility of using an Internet TV set-top device for those patients in need of Internet access.
RESULTS - Although the devices required some configuration before being installed in the home environment, they required a minimum of support and were well accepted by these patients. However, these patients used the Internet less frequently than their peers with home personal computers--most likely due to a lack of easy availability of the telephone or television at all times.
CONCLUSION - Internet TV set-top devices represent a feasible alternative access to the World Wide Web for some patients. Any attempt to use these devices should, however, be coupled with education to all family members, and an attempt at providing a dedicated television and phone line.
The proliferation of clinical practice guidelines (CPGs) has necessitated computerized solutions for guideline distribution and implementation. In this paper we describe a Web-based system that interactively presents CPGs at the point of care. Our system, known as Siegfried, provides a generalized solution for implementing CPGs by maintaining the guideline knowledge base separate from the application that presents the guidelines. As a result of this design, new CPGs can be easily added and existing CPGs can be expeditiously modified without additional programming. This system also solicits feedback from users regarding guideline recommendations and provides hypertext links to relevant Web-based instructional and educational resources.
Extensive utilization of point-of-care decision support systems will be largely dependent on the development of user interaction capabilities that make them effective clinical tools in patient care settings. This research identified critical design features of point-of-care decision support systems that are preferred by physicians, through a multi-method formative evaluation of an evolving prototype of an Internet-based clinical decision support system. Clinicians used four versions of the system--each highlighting a different functionality. Surveys and qualitative evaluation methodologies assessed clinicians' perceptions regarding system usability and usefulness. Our analyses identified features that improve perceived usability, such as telegraphic representations of guideline-related information, facile navigation, and a forgiving, flexible interface. Users also preferred features that enhance usefulness and motivate use, such as an encounter documentation tool and the availability of physician instruction and patient education materials. In addition to identifying design features that are relevant to efforts to develop clinical systems for point-of-care decision support, this study demonstrates the value of combining quantitative and qualitative methods of formative evaluation with an iterative system development strategy to implement new information technology in complex clinical settings.