E Ibrahim, M Boulos
E Ibrahim, M Boulos. Access To Online Information By Adult Saudi Cancer Patients. The Internet Journal of Medical Informatics. 2005 Volume 2 Number 2.
Part of a Dissertation for a Degree of Master of Healthcare Informatics of the University of Bath and the Royal College of Surgeons of Edinburgh, United Kingdom
It is estimated that about 800 million persons are online worldwide, of which 1.5 million are from Saudi Arabia . Patients with cancer and their caregivers frequently seek out information about the disease, management, therapeutic options, and prognosis [2,3,4,5]. Since the proportion of Saudi cancer patients who utilize online information resources is unknown; this study was designed to characterize Internet use by this group and to identify various barriers that hinder utilization.
Patients and Methods
Adult Saudi cancer patients who report to the outpatient facility of the oncology department at our hospital, were the potential participants. Participant must have a histologically confirmed diagnosis of cancer, and must have been informed about his/her diagnosis and management plan. Illiteracy or physical but not mental disability could not preclude participation.
Four Saudi research assistants invited eligible participants to complete a questionnaire that was designed based on literature review [6, 7]. Independent back-translation and comparison of the source with the Arabic translated text were performed to ascertain clarity and un-ambiguity. The Cronbach's alpha method was also used to estimate internal consistency reliability .
The study was approved by the Institutional Review Board and all participants signed informed consent.
The sample size of eligible participants for the initial phase of the study was determined according to definite assumptions. Because of a presumed drive to seek information, it was projected that access to Internet resources in this group would be higher than the 1% reported in the KSA  or the 5% reported recently according to the Global Reach statistics . Therefore, it is postulated that cancer patients might show a 10% Internet access rate. It is also assumed that the acceptable margin of error for that estimate is 5% and 95% is the confidence level that can be tolerated. Over approximately two-month period, approximately 3000 outpatient visits are expected. While nearly 1000 of these visits are made by patients with repeated encounters, it will become possible to draw the study sample from 2000 patients over two months. Based on these numbers, a sample size of 130 participants was required [10, 11]. To allow for a possible 15% wrong inclusion, withdrawal, data errors, etc. it was decided to include 150 patients.
Differences between groups, e.g., information resource users vs. nonusers, were compared using
In a pilot phase, the internal consistency reliability for all questionnaires' items revealed a satisfactory alpha value of 0.96. Moreover, the alpha values for some chosen items ranged between 0.95 and 1.0 indicating high internal consistency reliability.
Of all potentially eligible participants approached, 26 patients were excluded for the following reasons: 19 patients (11 females and 8 males) lacked the minimal information about their disease and/or prognosis; four females refused participation; two (one male and one female) had poor performance status; and one patient refused signing the consent form. The study included 150 eligible respondents.
There were 73 (49%) and 77 (51%) males and females, respectively. The median and the 95% confidence interval (CI) for age were 42 years (CI, 38 and 43 year). The median age for males and females was equal at 42 years.
Table 1 shows the characteristics of the participants. Surveying patients about how they received the information about their illness revealed that 140 (93%), 54 (36%), 42 (28%), 33 (22%), 32 (21%), and 25 (17%) obtained such information from the medical team, other patients, mentioned newspapers, family members, nursing staff, and television or radio, respectively. On the other hand, only 19 (13%) of patients used the Internet to receive online information.
Table 2 depicts the results of patients' responses to questions about access to computers and to the Internet information, perception of the quality of the Internet information, and the trust in such information. Despite the fact that 74% of patients have computers and 49% stated possible access to the Internet, only 13% actually used the Internet to seek health-related information. A large proportion of patients thought that the information retrieved is of excellent or good quality (50%), besides being trustable (35%).
In the subsequent section of the questionnaire, patients were asked about what information they would seek if there were a computer and an Internet access. Most patients would search for information concerning nutrition (74%) and their specific disease (69%), its treatment (69%) and its outcome (71%). Fifty-nine percent of patients also indicated that they would seek information about complimentary and alternative medicine (CAM).
In response to a question intended to explore respondents' perception about the criteria that would influence accessing a particular Web site, 93 (62%) and 87 (58%) of patients were influenced by the ease of use of a particular Web site and the currency of the content, respectively. On the other hand, sponsorship or qualifications of authors would only influence approximately one-third of the participants.
Table 3 depicts the barriers that preclude accessing Internet health-related resources from patients' perspective. The Table shows that inability to use computer and English language illiteracy were the most frequently quoted barriers. In addition, a large number of patients stated that they were not aware about the availability of online health-related resources.
Table 4 shows the characteristics of Internet users compared with that for non-users. Variables that found significantly different between the two groups in the univariate analyses were entered into a binary backward stepwise logistic regression multivariate analysis to identify variables that independently characterize users. The model identified owning a personal computer as the only variable that distinguished Internet users (Wald's statistics = 5.65, odds ratio 4.46 [95% CI 1.30 to 15.29],
Seeking cancer information on the Internet is very common for patients, caregivers, cancer survivors, healthcare professionals, and the public. While it was predictable that the majority of patients received information about their illness from the medical staff (93%); it was rather interesting to find that other patients were the second most common source of such information (36%). In accord with the latter finding, participants in focus groups of patients in the UK found that practical and experiential information from other patients was highly valuable .
The low rate of using the internet for seeking online health information in the present study (13%) was that reported among cancer patients in developed countries [2,3,4,5].
Although only few respondents were online health information seekers, large proportions thought that the information is of excellent or good quality (50%) and 35% would trust such information. In a survey from the USA, respondents with greater trust in online health information sources were significantly less educated and less health information oriented .
Nutritional information was the most frequently stated information that participants would be keen to find. The survey also showed that most patients would search for information vis-à-vis their specific disease, treatment, and prognosis. It was not surprising that 60% of the surveyed patients would seek CAM information online. Cancer care professionals in the country should be aware of the significant desire for CAM information and consequently, they must protect information seekers from non-credible knowledge or scientifically unfounded fraud [14, 15].
Ease of use and currency of the information, were the most frequently stated criteria that would influence users to access a particular Web site. The low computer literary rate among our patients December explain their consideration for easy Internet access. While there are many informative guidelines that teach patients how to find and evaluate the quality of online information [16,17,18], unfortunately no such guidelines are available in Arabic language.
In the population of this study, despite that 74% and 49% of patients owned computers or have potential access to the Internet, respectively, it appears from patients' perspective – that computer and language illiteracy are the most important obstacles that would widen and deepen the technology gap. Comparing the 19 patients who actually used the Internet to find health information vs. those who did not, showed that owning a personal computer was the only variable that differentiated the two groups.
The current series December have several limitations. The demographics and the number of the respondents in the present study December limit the generalization of the findings to other populations. However, the sample size in our series was determined using accurate statistical methods and valid assumptions. Furthermore, our facility is a referral center for cancer patients from a fast growing area of the country. Therefore, it is it is likely that the derived results would remain unchanged in another representative population.
Another limiting feature is related to the use of non-validated questionnaire. However, the results of the performed validation and reliability processes were assuring.
Finally, the study did not address the potential confounding effect of non-Internet information resources such as books, magazines, radio, etc. However, baseline assessment of the information sources in this study showed that only few patients have actually used these educational tools.
The derived results of the current project served as impetus to formulate pragmatic recommendations to promote accessing Internet resources by cancer patients:
Healthcare authorities in the country should plan and implement a nationwide program to educate patients about computer and Internet use. The program should develop a strategy to overcome barriers to access.
There is a significant lack of adequate number of credible cancer information resources in Arabic language. It is the responsibility of the healthcare authority to secure resources to establish trustworthy Arabic language cancer information Web sites.
Healthcare professionals should be able to help patients by making specific Web site recommendations to potential users.
Healthcare providers should not underrate the wide prevalence of CAM interest in the country. We must protect public interest and guide patients about the credibility and quality of Internet CAM information.
The study was partially funded by the Research Center at King Faisal Specialist Hospital and Research Center, Jeddah, Kingdom of Saudi Arabia.
Ezzeldin M Ibrahim, MD Chairman, Department of Oncology Executive Director of the Research Center King Faisal Specialist Hospital & Research Center PO Box 40047 Jeddah, 21499 Kingdom of Saudi Arabia Tel.: +9665-0582-5953 Fax: +9662-663-4295 e-mail: firstname.lastname@example.org