The goals of the present study were to assess the reaction of adult patients and parents of children with metabolic conditions to receipt of an IP to visit GHR, a website providing genetic information for the general public, and the perceived utility of information found on the site. Participants in this study were enthusiastic about the IP; in fact, almost 89% of respondents agreed that receiving an IP was a good idea, and nearly all respondents used the IP to visit GHR. In addition, three-quarters of respondents reported visiting the site 2 or more times during the study period. While other studies have pointed to the successful implementation of IPs in adult [7
] and pediatric patient [6
] populations, the findings from this study indicate the IP also is well received by adult patients and parents of children with metabolic conditions.
In fact, 50 of the 82 initially enrolled participants used the IP to visit GHR, for an overall IP “fill” rate of nearly 61%. The rate observed in this study was slightly lower than the 65% rate reported in a study that also employed email prompts [6
] but compared favorably to fill rates recorded in other studies of IP implementation, in which participants did not receive such prompts [5
]. The use of email reminders clearly played a role in this study's response rate: Approximately 59% of respondents required at least 1 follow-up email prior to online survey submission. The results supported those of Ritterband et al., who found that email prompts improved compliance with web-based IPs [6
]. Similar to that study, in which reminder emails contained the website's address, the follow-up emails sent to participants in the present study contained links to GHR and the online survey, facilitating access to both sites and likely enhancing compliance. Of note, the use of email as an adjunct to Internet-delivered interventions has been shown to also support behavior change [16
Feedback from survey respondents indicated that the information found on GHR was useful in several ways. For example, 80% of survey respondents agreed that the health information they found on GHR added to what their physicians had told them, and almost all respondents agreed that use of a high-quality source of health information encouraged communication with providers. Sixty percent of respondents reported an improved understanding of their own or their children's medical conditions after visiting GHR, and 42% reported that the site prompted them to look for, or consider seeking, additional health information. These results were similar to those observed by Siegel et al., in which 70% of patients reported that information found on MedlinePlus improved their understanding of an illness or health condition and 36% said it influenced whether they would look for more health information [7
Specific user comments were interesting and generally positive. Some suggestions for improving the site included providing more information about hyperphenylalaninemia and links to sites with practical advice regarding management of PKU. User comments were shared with GHR's developers for consideration as appropriate.
While several respondents said they had been living with their children's medical condition for some time and, as a result, did not find new information on GHR, 86% of users in the present study expressed satisfaction with the information they found on the site, and 80% would recommend it to others. The number of years since diagnosis was not significantly correlated with satisfaction, future use of GHR, or probability of recommending the site to others. Other studies have shown that duration of symptoms does not appear to influence patients' desire for links to medical websites and that cancer patients continue to seek information on the Internet post-treatment [2
Patient satisfaction with provider-referred websites has been noted by others. For example, in a study of physician-directed email IPs with links to MedlinePlus, two-thirds of patients reported satisfaction with the information found on the IP site and 86% said they would use the site again [15
]. Furthermore, 93% of patients who were directed by their physicians to retrieve condition-specific health information on MedlinePlus reported they would use the IP site again, and 91% would recommend it to others [7
]. Parents in a randomized controlled trial of IP use in a general pediatric clinic who used prescribed websites were significantly more likely than nonusers to state that they would use the IP again in the future and had already recommended the IP to family members or friends more often than nonusers during the follow-up period [5
Persons who completed both surveys were significantly older and more highly educated than those who completed only the initial survey. Persons who did not complete both surveys might have perceived that they received adequate information from their physicians and, therefore, did not feel compelled to visit GHR. Another possibility might be that, although conceived as a consumer-friendly website, individuals with fewer years of formal education might have been less inclined to visit GHR, possibly anticipating that they would have difficulty understanding the genetic information on the site.
This study is unique in two key ways. First, while physician-directed IPs have been used in other patient populations, to the authors' knowledge, this approach has not previously been implemented among adult patients and caregivers of children with metabolic disorders. Second, while previous studies have employed physician-directed IPs to various websites, including NLM's MedlinePlus website, this study is the first to use an IP to direct patients to GHR, a website specifically designed by NLM for consumers seeking online genetic information.
The findings from this study might not be generalizable to other populations given the high level of education of the participants and the fact that all respondents had home computer access. In fact, Utah is among the most wired states in the country, with 74.8% of Utah residents able to access the Internet from home [18
]. Furthermore, three-quarters of the study participants found it easy to read health information on a computer compared to books or pamphlets. Another limitation was the use of a convenience sample, which might have been a source of bias. Expansion of this study in a larger, more diverse population is needed to tease out any potential effects of education and Internet access on user experience with GHR. Potential next steps might include similar studies in other states or regions and/or implementation of the study intervention by physicians caring for patients with other genetic conditions. In any case, results from the present study can serve as baseline data for future studies of GHR, and study outcomes may be adapted to evaluate user perception of other websites.
Increasingly, parents are using the Internet to retrieve health information for their children and desire professional guidance to locate information that is accurate and reliable [19
]. This study is important because it demonstrates that adult patients and parents of children with metabolic conditions will visit a previously unknown website to retrieve health information when directed by a trusted health care provider. The high level of satisfaction with GHR argues for expanded use of the IP approach in this patient population.