Cawdron, R.*; Issenman, R. M.*†
*Department of Pediatrics, McMaster University, and †McMaster Children's Hospital, Hamilton Health Sciences Centre, Hamilton, Ontario, Canada
Received October 30, 2001; accepted May 23, 2002.
Address correspondence and reprint requests to Dr. Robert Issenman, McMaster Children's Hospital, Hamilton Health Sciences Centre, 1200 Main St. West, Room 3F31, Hamilton, ON L8N 3Z5, Canada (e-mail: firstname.lastname@example.org).
Objective: The internet has been touted as a cost-effective method of providing valuable patient education and support resources. However, little is known of the level of internet interest in or access to web-based resources of most chronically ill populations generally, and pediatric populations in particular. Web-based patient resources could be especially applicable to the pediatric inflammatory bowel disease (IBD) population given the potential appeal of an anonymous forum for this group.
Methods: Tertiary-care clinic patients aged 8–18 years and diagnosed with IBD were surveyed by mail. χ2 and/or analysis of variance were used to compare demographic data from nonresponders and responders and for subgroup analyses.
Results: Of 162 eligible patients, 63 (38.9%) completed the survey. Responders did not differ significantly from nonresponders by age, sex, or distribution of disease. Overall, 98.4% of those surveyed had internet access, with 61.9% having access at school. Ninety-five percent had used the internet, while 91% expressed interest in visiting a pediatric IBD website for general IBD information (83%), for support (73%), to pose questions (78%) or read (73%) or respond (60%) to questions, or to chat with others (46%). Despite expressed interest, far fewer had ever used the internet as an IBD information (52.4%) or support (9.5%) resource. Similarly, although 15.8% anticipated visiting a pediatric IBD site weekly, only 1.5% had done so in the week of the survey.
Conclusions: Reported levels of interest in web-based patient resources are high among pediatric IBD patients, yet use may be infrequent.
Patient education is an integral part of health management because of the psychologic, medical, and economic benefits. Improved patient knowledge can reduce anxiety, increase treatment compliance, and facilitate earlier diagnosis and treatment of disease complications (1–3).
Despite the current variations in depth, accuracy, and reliability of posted information, the internet's potential as a cost-effective patient education resource is widely recognized and partly realized (4–8). For the newly diagnosed or chronically ill, information and support sites can also help to educate, comfort, and empower (9–11). The convenience and anonymity provided by such electronic patient fora can be especially appealing for those with debilitating or socially stigmatizing conditions, such as inflammatory bowel disease (IBD). Obtaining answers to questions concerning some facets of IBD, such as bowel symptoms or sexual functioning, can be especially awkward for younger IBD patients.
The demand for IBD-related information is real. Recent work suggests 66% of pediatric IBD patients and 95% of their parents want to know more about IBD (12). However, limitations of the clinical setting may not afford patients and their families the opportunity for in-depth discussion or timely support. The accessibility of web-based information may account for the internet being ranked as the second most preferred informational resource among a pediatric IBD population (12).
Interest expressed by the pediatric IBD population parallels the general increase in popularity of web-based health information. The limited data regarding the use of the internet health information resources among pediatric groups indicates that approximately one third to one half of both general and outpatient US adolescents have accessed health information online (13–15). Recent Canadian statistics indicate that 57% of households are estimated to use the internet to seek medical or health-related information (16).
In this study we address internet use among pediatric patients with IBD and in order to provide a more comprehensive picture of this group's interest in accessing various online patient support resources.
MATERIALS AND METHODS
All patients aged 8 to 18 years with IBD attending the pediatric gastroenterology clinic at Children's Hospital, Hamilton Health Sciences Center, Hamilton, Ontario, were mailed a questionnaire addressing patient demographic characteristics, internet use, and interest in accessing various online resources relevant to the pediatric IBD patient. Patients who had not visited the clinic in the last 24 months or had not yet had their diagnosis verified through radiographic or endoscopic testing were excluded. Patients who did not respond to the initial mailing were sent a second copy of the questionnaire within 3 months. Descriptive statistics for both responders and nonresponders were collected, and analysis of variance or χ2 tests were used to compare these groups and for other subgroup analysis. The project received approval from the Hamilton Health Science Corporation/McMaster University Research Ethics Board.
Of 162 eligible patients, 104 (64.2%) had Crohn's disease (CD), while another 55 (33.9%) had ulcerative colitis (UC). Three (1.9%) had undifferentiated colitis at the time of analysis. The mean age of eligible patients was 14.6 ± 2.4 years, and 88 (54.3%) were male. Patients with CD were slightly older, on average, than those with UC, but this difference was not statistically significant. The ratio of patients with CD to UC in the sample (1.89) is similar to that found in other Canadian pediatric populations (2.11), while the female to male ratio (0.84) is higher than that reported in a central Canadian province (0.65) (17).
The 63 (38.2%) surveyed were generally representative of this pediatric IBD population. Although the differences were not statistically significant, there was a slightly greater proportion of males among those responding, and responders were an average of 6 months younger than nonresponders. The responding patients with UC were significantly younger than nonresponding patients. Respondents were from families that were more highly educated compared with the general population, as data from an earlier study of this group indicated that 71.7% of parents had at least some post–secondary institution education, compared with the provincial average of 48.9% (Table 1) (18).
Internet Use Among Pediatric Patients With Inflammatory Bowel Disease
A total of 62 patients (98.4%) reported having access to the internet, with 38 (60.3%) having access at school and at home, and 1 (1.6%) with access only at school. A total of 95.2% of respondents reported using the internet. Slightly more males (97.3%) than females (92.0%) reported using the internet at some time, but this difference was not statistically significant.
Sixty-two percent of the sample was currently using the internet weekly or daily, 12.9% did so monthly, and 24.2% rarely or never used the internet. Those with access at both home and school did not use the internet significantly more often than those with access at school only. Although there were no significant differences in current internet use by gender, there was a trend toward more males using the web on a daily basis than females (45.9% vs. 24%;P = 0.08), but less on a weekly basis (18.9% vs. 36%;P = 0.13). Eighty-nine percent reported using the web to search for general information, 57% had used real-time features such as chat rooms, and 78% had e-mail. There were no significant differences in the use of e-mail or chat features by sex. Respondents younger than 12 years tended to use interactive features (chat rooms, e-mail) less often than older patients but reported similar use of informational resources. Analysis by disease revealed that a greater proportion patients with CD than UC had e-mail (87.2% vs. 66.7%;P = 0.019), which may be attributable to the age difference between patients with CD and those with UC (Fig. 1).
Inflammatory Bowel Disease Web-resource Use and Interest
More than half (52.4%) of respondents had sought information concerning their IBD. However, a relatively small percentage (14.3%) had ever visited an IBD organization's site, and even fewer (9.5%) had ever sought peer support for their IBD over the internet. There was a trend toward greater use of IBD resources among female respondents. Older respondents (age ≥ 15 years) made use of the internet, e-mail, and web-based IBD resources more than younger patients. Patients with UC indicated they would be more likely to access an IBD patient chat room than patients with CD(64.1 vs. 35.9;P = 0.046;Fig. 2).
The proportion of IBD patients reporting an interest in accessing patient information (90.5%) and support resources (73%) was much larger than the proportion actually accessing those resources. Specifically, a high proportion of patients reported an interest in accessing a pediatric IBD website for general IBD information (91.2%), reading others' coping experiences (80%), seeing others' questions (81%), posing personal questions (86%), or responding to questions (67%), and chatting with others (51%). A fifth anticipated visiting on a weekly basis, 34% monthly, 32% only when sick or to ask a question, and 15% rarely.
The need for timely, cost-effective patient information and support resources is a concern for both health-care providers and recipients. The internet can afford patients the opportunity to access and individualize disease-related information. For younger patients with IBD, this interactive medium can also overcome geographical hurdles, help to preserve privacy, and facilitate frank discussions of socially awkward topics.
Although studies indicate that computer-based patient education is effective and easy to use (2), there is a discrepancy between interest and use of web-based health-related information among pediatric patients with IBD. In our sample, there was near unanimous interest, but only half had ever used web-based patient resources. Another pediatric IBD population reported little reliance on this medium (7%), although it was cited as the second most preferred method of obtaining disease-related information (12).
Although our sample is relatively small, possibly biased in favor of internet users, and based on self-reported rather than observational data, our results echo other current research on web-based health-information resource use. Our results also mirror recent Statistics Canada data indicating that 90% of youth aged 15–19 years used the internet in the last 12 months, and that men and women had similar internet use rates (56% vs. 50%, respectively) (19). All of these findings point to similar internet use patterns among young users, with no sex bias.
Despite the high degree of internet use and the high degree of interest is making use of IBD web resources, only about half of interested respondents have ever followed though and used an IBD web resource. This striking gap points to a need for further research to more fully and qualitatively explore the reasons for the discrepancy in interest and actual use of web-based patient information. However, certain factors provide possible explanations for this discrepancy among pediatric IBD patients:
1. Relatively few of the many websites designed to furnish information and/or support to the patient with IBD are oriented specifically to the pediatric IBD population. This may be problematic in view of the particular clinical and psychosocial considerations of pediatric patients with IBD (20).
2. The proliferation of internet resources is a double-edged sword; while information resources abound, extracting specific information or addressing particular questions can be a tedious and daunting task. When information or support for the pediatric patient is buried within a site better suited to an adult population, it may also be dissuasive.
3. Surveys comparing adult patients with IBD in tertiary-care settings with those in internet settings indicate that internet populations can differ in their therapeutic preferences and motives (21). It may be most useful to approach the internet and traditional health information resources as complimentary resources fulfilling different informational and support needs. The assumption that an interactive medium can substitute for face-to-face interaction with peers or health-care providers, and vice versa, may be unrealistic.
4. A recent study of pediatric patients with IBD finds them to be well adjusted compared with those with symptoms of functional bowel syndrome (22). High interest but low current use may be caused by patients' infrequent need for support and information resources rather than a lack of awareness or access to the resources currently available. This last point is supported by our data indicating little recent use of information resources and emotional support resources among our population.
Although use may be sporadic, there can be little doubt that disease-related internet resources are used by a substantial proportion of the pediatric IBD population. Health-care providers in cooperation with community organizations may want to design patient-oriented websites that are more appropriate for younger patients' needs, easy to locate on the web, and that cater to the particular demands and requirements of internet populations, for when the need arises.
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