The findings from this study provide limited support for the primary hypothesis that the overall satisfaction of participants who received proactive services would be greater than that of participants receiving standard information services. There were modest increases in satisfaction, as well as modest use of the services. Some of the results suggest further exploration into information prescription services of this sort and the patient response to them.
The satisfaction data from this study suggest that NICU mothers were more satisfied than the BrCa patients were with the totality of information they received during their hospital experience, whether expressed in terms of clinical problems (diagnosis, treatment) or in terms of the sources of information (doctors, nurses). There were suggestive differences in the two studies regarding satisfaction: In the BrCa study, there were no differences in satisfaction between different components of care; in the NICU study, diagnosis, treatments, respiratory treatment, and medications showed differences in satisfaction among the intervention and control groups.
BrCa patients in the IRx group experienced greater reassurance from received information than did those in the control group. They accessed the librarians and the study website at a rate comparable to that of NICU IRx group mothers. IRx services did not increase or decrease personal access to clinicians.
The observed differences were not thought to be due to differences in the information services received by the two study populations, because the provided services were essentially the same, or to differences in the quality and amount of information provided by the two clinical teams, because participants rated both clinical teams highly. Also, the observed differences were not likely due to differences in overall satisfaction with Johns Hopkins, because the participants showed an ability to differentiate the quality of provided information according to question category.
The observed differences between the BrCa and NICU studies are most likely a reflection of differences in the makeup of the cohorts in the 2 studies. The majority of the BrCa cohort members were Caucasian, and the NICU cohort were African American. The average age of the BrCa cohort was greater than 50 years, while the NICU cohort members were women of childbearing age. BrCa patients had greater Internet access at home, although fully half of the NICU mothers had home Internet access. A majority of the BrCa patients worked outside the home, whereas a minority of the NICU mothers did so. A majority of BrCa patients had dealt with their disease before, although over 90% had “early” disease, while over 80% of the NICU patients had not previously experienced having a premature baby in a NICU. Thus, there are both socioeconomic and disease-related differences between the 2 groups. The relative impact of these factors on satisfaction with IRx services would benefit from further elucidation.
The parent or patient response to the IRx might also be related to information factors such as the amount of information already known, perceived relevance of new information, and receptivity to obtaining more information. Clinicians speak of patient's emotional readiness, and librarians speak of the “teachable moment.” These factors varied significantly in the BrCa and NICU settings of this study. Hopkins BrCa patients often entered the study for a second opinion, with prior experience, or otherwise at a late stage in their treatment timeline. In these cases, information needs might have been satisfied to some extent prior to arrival at the clinic. By contrast, NICU parents generally had little or no prior indication of problems that might arise with prematurity.
Patients in the BrCa IRx group used both the website and the librarians more frequently than did their counterparts in the NICU study. Although few data are available on the proportion of users who take advantage of particular library services, it is generally acknowledged that utilization rates of specialized services can be as low as 5% [30
]. Thus, it seems that the rate of utilization of the IRx was reasonable.
While the NICU IRx mothers posed questions to the librarians less frequently than did the BrCa patients. NICU mothers were satisfied with more individual sources of information. NICU IRx mothers were also more satisfied with health information from various providers (e.g., doctor, nurse) than were the NICU control group mothers. A possible explanation for the difference in satisfaction without accompanying use of information resources is Wilson's theory of information reserves [31
], in other words, that the mere existence of sources that are trusted provide satisfaction to an individual whether they are used in a particular instance or not. Practicing librarians acknowledge this phenomenon, but it is not well documented [32
At the same time, BrCa patients in the IRx group reported feeling greater reassurance than did their control counterparts, suggesting that the IRx might affect more than just satisfaction. Assessing the role and relative importance that reassurance plays in patient responses to information would be important for future IRx studies to address.
The decision to implement IRx services at a particular institution requires not only an assessment of effectiveness and provider burdens, as provided in the current study, but also an assessment of costs. While librarians' time spent providing IRx services in this study was documented, the artificial study conditions (particularly the overlap between enrolling subjects and informing them of the service) made it difficult to determine the true costs of providing IRx services.