Public Knowledge of Inflammatory Bowel Diseases in Saudi Arabia: A Cross-Sectional Survey Study

Background: Lack of public understanding and perception may lead to a general downplaying of inflammatory bowel disorder (IBD) symptoms as they affect a less socially acceptable area of the body, which may be a significant component in the everyday struggles of an individual with IBD. Aim: The aim is to assess the public knowledge of Crohn's disease and ulcerative colitis in Saudi Arabia. Method: This was an online survey study that examined public knowledge of IBD in Saudi Arabia for the duration between February and March 2023. Participants were invited to participate in this study using social media websites. The questionnaire tool comprised three sections: a sociodemographic characteristics section (seven questions), an awareness section (two questions), and a knowledge section (24 questions). A binary logistic regression analysis was utilized to identify the factors that influenced the participants’ knowledge of Crohn's disease and ulcerative colitis. Results: A total of 630 individuals participated in this study. Around 28% of the participants reported that they had never heard of, read about, or dealt with Crohn’s disease. Around 16% of them reported that they had never heard of, read about, or dealt with ulcerative colitis. The mean overall knowledge score of the study participants was 8.3 (standard deviation: 2.4) out of 24, which is equal to 34.6% and represents a weak level of knowledge of IBD. The participants showed a weak level of knowledge for all sub-scales of knowledge related to IBD general knowledge, diet, treatments, and complications. The knowledge sub-scale level ranged between 30% and 36.7%. Females, the participants in the moderate and high-income category, those who lived in urban areas, those with a higher level of education, and those who reported having osteoarthritis were more likely to be knowledgeable about IBD compared to others (p≤0.001). Conclusion: In Saudi Arabia, a low level of IBD awareness was identified among the general population, supporting findings from other countries. Future research should aim to identify effective educational interventions to increase public awareness of this group of diseases, which would ultimately facilitate early diagnosis and improve patient outcomes.


Introduction
Crohn's disease and ulcerative colitis are two conditions known as inflammatory bowel disorders (IBDs) are chronic inflammatory ailments of the intestines with uncertain underlying origins. According to current thought, they are most likely the outcome of intestinal immune response dysregulation to gut microbiota components in genetically vulnerable people [1,2]. If there is no immunological response to soluble antigens in the intestinal luminal stream, this might be interpreted as a loss of oral tolerance. Although long considered to be ailments of the West, they have become a major public health concern on a worldwide scale in recent years [3][4][5][6].
For many people with IBD, their sickness is concealable or "invisible" to others around them; thus, they do not seem to be ill. This may lead to insensitivity on the part of the general public owing to a basic misunderstanding of the condition [7,8]. This lack of public understanding and perception may lead to a general downplaying of IBD symptoms as they affect a less socially acceptable area of the body. Body image dissatisfaction (BID) has been assessed in individuals with medical conditions in which appearance-related changes and disfigurements are readily visible and interpersonally salient. It has been demonstrated that in such populations, appearance-related alterations can pose substantial obstacles to the maintenance of positive self-esteem and body image. This may further be a significant component in the everyday struggles of an individual with IBD [7,9]. Up to 84% of IBD patients suffer stigma, whereby they perceive a negative societal stereotype attached to them [10,11]. The stigma felt by individuals with IBD may decrease adherence, self-efficacy, and health-related quality of life, and increase anxiety and sadness [11,12]. Low levels of public awareness may also affect those with IBD, such as when they need immediate access to restrooms in shopping and dining facilities [13].
One earlier study has shown that an increase in public understanding, such as via media efforts, is the sole element with a positive correlation to stigma reduction [10]. A previous study found that 31% of 1,001 participants in an Austrian national poll had heard of Crohn's disease, no more than 20% had heard of ulcerative colitis, and fewer than 21% properly connected these words with intestinal illness [9]. In a poll of 1,200 people in the United States, 11% had no understanding of IBD, and the median awareness rating was 5.5/10 [10]. In contrast, public knowledge of illnesses such as diabetes is higher [9]. Participants in a study on knowledge levels regarding IBD that included patients with IBD, their friends, and family members returned results that showed levels remained very low, with a mean score of 50% [14]. Enhanced public knowledge of IBD would have the essential effect of boosting early identification and diagnosis, which may minimize primary consequences of undiagnosed illness development [9,15], in addition to the advantages of decreased stigma and increased restroom access. The noted lack of public knowledge of IBD is a basic aspect of the everyday problems experienced by adults and children with the condition, and raising awareness may lead to better outcomes and assistance with disease-related practical concerns. There are limited studies in Saudi Arabia that have examined public knowledge of IBD. Therefore, this study aimed to assess the public knowledge of Crohn's disease and ulcerative colitis in Saudi Arabia.

Study design
This study used a cross-sectional online survey using self-developed questionnaire to examine public knowledge of IBD in Saudi Arabia for the duration between February and March 2023.

Study population
Our study population comprised all the residents in Saudi Arabia who were aged 18 years and over and currently lived in the country. There were no exclusion criteria. The inclusion criteria were highlighted on the cover letter of the survey.

Participant recruitment
A convenient sampling technique was employed in this study. The participants were invited to participate in this study using social media websites (Facebook, SnapChat, and WhatsApp). The survey link was posted on Facebook, SnapChat, and WhatsApp. The study objectives were highlighted in the cover letter of the survey and the participants were informed that their participation would be considered to be written consent.

Study tool and piloting phase
The researcher developed a questionnaire tool to examine public knowledge of IBD. The questionnaire tool was developed based on an extensive literature review. The questions numbered 33. The questionnaire tool comprised three sections: a sociodemographic characteristics section (seven questions), an awareness section (two questions), and a knowledge section (24 questions). The knowledge section questions were in a yes/no format. The knowledge section was subdivided into four sub-scales. These were: general knowledge of IBD, the recommended diet, treatment, and complications. For each correct answer, a score of one was given. Therefore, the maximum attainable knowledge score would be 24. The higher the score, the better the knowledge.
The face of validity of the questionnaire was checked by expert clinicians from the faculty of medicine in King Abdul-Aziz University, Saudi Arabia and they confirmed the relevance and comprehensibility of the items in the questionnaire. They confirmed items relevance, clarity and comprehensibility, and appropriateness of response options. To check the understandability of the questionnaire tool, we conducted a pilot study on a small group of members of the general public before distributing it on a larger scale. This was performed after the questionnaire tool was checked by expert clinicians.

Ethical approval
This study was approved by the Research Ethics Committee at King Abdulaziz University (Reference Number 43-23). As participation in the study was voluntary, the research ethics committee approved the consent waiver.

Sample size
Using a confidence interval of 95%, a standard deviation (SD) of 0.5 and a margin of error of 5%, the required sample size was 385 participants.

Statistical analysis
The Statistical Package for Social Science software version 27 (IBM Corp., Armonk, NY) was used to analyze the data for this study. Descriptive statistics were used to present the findings. The normality of the knowledge score was checked using histogram and skewness and kurtosis measures. Continuous data were presented as mean and SD and categorical data were presented as frequency and percentage. Binary logistic regression analysis was used to identify factors that influenced the participants' knowledge of Crohn's disease and ulcerative colitis. The dummy variable for the logistic regression was defined as a score of or equal to the mean score of the study sample, which was 8.3 (the cut-off point used to define good knowledge for the logistic regression analysis). A confidence interval of 95% (p < 0.05) was applied to represent the statistical significance of the results, and the level of significance was assigned as 5%.

Participants' demographic characteristics
A total of 630 individuals participated in this study. The mean age of the study participants was 34.7 (SD: 14.7). Around 68% of them were males and 72% were employed. Almost 68% of them reported that they lived in urban areas. A similar percentage of them (64.3%) reported that they had a moderate monthly income. More than half of them (56%) reported that they had a diploma. The most common comorbidities among the study participants were osteoarthritis, hypertension, and diabetes mellitus, measuring 35.7%, 32.2%, and 27.8%, respectively. Table 1 presents the participants' demographic characteristics.

Participants' knowledge of inflammatory bowel syndrome
The mean overall knowledge score of the study participants was 8.3 (SD: 2.4) out of 24, which is equal to 34.6% (ranged between 17% and 54%), and represents a weak level of knowledge of IBD. The participants showed a weak level of knowledge for all the sub-scales of knowledge related to IBD general knowledge, recommended diet, treatments, and complications. The knowledge sub-scale level ranged between 30% and 36.7%. For further details on the knowledge score for each sub-scale refer to Table 3.  Females, participants in the moderate and high-income category, those who lived in urban areas, those with a higher level of education, and those who reported having osteoarthritis were more likely to be knowledgeable about IBD compared to others (p≤0.001) ( Table 4).

Discussion
The key findings of this study are as follows: 1) a considerable proportion of the Saudi population reported that they had never heard of, read about, or dealt with Crohn's disease or ulcerative colitis; 2) the general public in Saudi Arabia demonstrated a weak level of knowledge of IBD. The participants showed a weak level of knowledge for all the sub-scales of knowledge related to IBD general knowledge, recommended diet, treatments, and complications, and 3) females, participants in the moderate and high-income category, those who lived in urban areas, those with a higher level of education, and those who reported having osteoarthritis were more likely to be knowledgeable about IBD compared to others. Few studies have examined public knowledge of IBD. These have focused on specific populations, including patients with IBD and pediatric populations [16][17][18][19].
Although the incidence of IBD has been stable (or perhaps dropping) in many Western countries, prevalence is increasing owing to the disease's early onset and low mortality [6]. IBD is becoming prevalent in populations in newly Westernized countries at a pace equivalent to the substantial increases witnessed in North America, Europe, and Oceania during the previous century. IBD places a substantial financial and resource strain on healthcare systems [6]. The reason for IBDs is unknown. They are thought to be the outcome of dysregulation of the intestinal immune response to gut microbiota components in genetically vulnerable people [2,20]. This might be interpreted as a loss of oral tolerance, or the absence of an immunological response to soluble antigens in the intestinal luminal stream [21]. Dietary shifts and environmental pathogen exposure are additional contributors to the increase in IBD prevalence [21].
In our study, we found that 28% of the participants reported that they had never heard of, read about, or dealt with Crohn's disease. Around 16% of them reported that they had never heard of, read about, or dealt with ulcerative colitis. This is lower than the findings of a previous study in Austria, which reported that 68% to 79% of the participants had never heard of or read about IBDs [9]. The mean overall knowledge score for our study participants was 8.3 (SD: 2.4) out of 24, which is equal to 34.6% and represents a weak level of knowledge of IBD. The participants showed a weak level of knowledge for all the sub-scales of knowledge related to IBD general knowledge, recommended diet, treatments, and complications. A previous study in New Zealand reported a higher level of knowledge of IBD compared to our study (58%) [19]. Similarly, this study reported a deficiency in all knowledge sub-scales (treatment, growth, diet, and risk factors) [19].
Another study in Austria also reported a weak level of knowledge of IBD among the Austrian population [9]. A previous systematic review reported that there is a lack of knowledge about IBDs among both members of the general public and patients [22]. An inadequate level of public knowledge of IBD may have multiple negative consequences on patients' outcomes. It might lead to disease progression as a consequence of delayed medical consultation [9,19]. Increasing public awareness of IBD could lead to an increase in selfreferrals to general practitioners, resulting in early diagnosis and the prompt initiation of effective treatment. The beliefs and knowledge of patients regarding their disease may affect disease management, quality of life, and psychological health related to it [22]. Low treatment adherence is associated with therapy-related misinformation [22]. To facilitate earlier diagnosis, mass media, and education campaigns may increase public awareness [22].
In our study, we found that females, participants in the moderate and high-income category, those who live in urban areas, those with a higher level of education, and those who reported having osteoarthritis were more likely to be knowledgeable about IBD compared to others (p≤0.001). This was different from the findings of a previous study in New Zealand, which reported that there was no statistically significant difference in the level of knowledge among participants from different demographic groups [19]. Previous studies have identified that a higher level of education is associated with a higher level of knowledge of IBD [16][17][18].
The use of an online survey to recruit the study participants is not free from criticism as a considerable proportion of the targeted population could be individuals who do not have access to social media websites. However, according to the last available statistics in 2023, the number of social media users in Saudi Arabia is around 79.3% of the total population.

Conclusions
Confirming the findings from other countries around the world, a low level of knowledge of IBD was identified among the general public in Saudi Arabia. Future studies should aim at identifying effective educational interventions to enhance public knowledge of this class of diseases, which may ultimately facilitate early diagnoses and patients' outcomes positively.