Stoma care has evolved as a specialty, as well as the technique and the appliances used. These developments are believed to have made patients more comfortable with their stomas and perform their everyday activities, including their religious observances, more conveniently. However, patients with different cultural, socioreligious, and economic backgrounds are expected to adapt to their stomas differently[7]. It was thus worthwhile to study the impact of stoma in the Saudi population - possessing distinctive sociocultural characteristics and religious fervor, in the modern era of stoma care with access to contemporary facilities and appliances[8].
The questionnaire that we used measured various aspects of QoL as specified by WHO[9,10]. We modified its original version to meet the objectives of our study and facilitate the patients to respond clearly and straightforwardly- taking minimum time, and simplifyign the scoring.
According to our findings, QoL scores of people in different sociodemographic groups varied, though not to a great extent.The distinction probably would have been more obvious had the study been on a larger scale. Consistent with the findings of other studies, younger patients had significantly lower scores, possibly due to their emotional and future concerns [11].Women also had somewhat lower QoL scores than men, likely due to their worries about their altered body images and constraints in doing household tasks [8]. Other studies contradict it, considering that women improve their quality of life by seeking social support and greater participation in social activities than men [7]. Most of our patients belonged to the educated class, possibly because the internet user only could respond to the questionnare. There might thus be a selection bias. In-person interviews could have avoided it but these would have been logistically challenging as patients belonged to different institutions and geographic areas.
Obesity has been linked to stoma retraction and an improper pouch fitting [12]. However, we were unable to find any correlation between patients’ body mass index and QoL. A person's marital status also had little impact though the post stoma 6% divorce rate, which had equal gender distribution, is socially disturbing. It's possible that the disruption to one’s sexual life contributed to it.
A steady increase in the prevalence of inflammatory bowel disease in Saudi Arabia explains why it ranked as the most prevalent underlying cause of stoma in our patients, whereas in the majority of published studies, it was the colorectal cancer [13].
Given the high prevalence of colorectal in Saudi Arabia, cancer was the second leading cause of stomas among our patients [14]. Cancer patients had slightly better QoL scores than those with benign conditions, possibly because of their better mental preparedness to cope with the consequences of a life-threatening illness’s treatment. Patients with colostomies had higher scores than of those with ileostomies for the obvious reason of their easier manageability.The evidence that employment improves QoL and joblessness lowers it was validated by our regression analysis [15].
The overall QoL score in our study population was 6, which was lower than what other countries have reported. For example, in Brazil, it was 6.2, Australia 6.9, Netherlands 7.1, India 7.5, and United States 7.3 [3,10,16]. None of our patients scored 10/10, which would have indicated unimpaired QoL. However, according to the score-based criteria, most of our patients had a moderate or minimal impact on QoL.
Stoma patients are likely to face several physical problems as a result of the changed anatomy. The most troublesome and negatively impacting QoL is a poor stoma site, precipitated by obesity, emergency surgery, cancer, and improper technique[17,18]. A poorly placed stoma increases the risk of leakage, pouch ill-fitting, and parastomal complications, and also has been associated with sexual dysfunction, insomnia, weight loss, and depression [19,20]. It was also a significant negative factor in our patients’ QoL.
Leak and offensive odor are common issues in stoma patients. These are annoying as these interfer with activities at home, work, sports, and social and religious settings. In the Ostomy Life Study, 91% of patients expressed concern about leakage [20]. Our study also endorsed it. Steps to prevent or mitigate them are worth attempting.
About 75% of stoma patients might suffer from parastomal skin complications - the majority due to leakage and adhesives [20]. These are more common in patients who had ileostomies rather than colostomies. Nevertheless, their incidence in our patients was lower(49%) than reported.
Patients' QoL can also be negatively impacted if they develop complications like prolapse, hernia, and obstruction. Their incidence is higher in patients treated in substandard medical facilities [21]. These could prompt the patient to visit the hospital in an emergency, further adding to their stress. A third of our patients required such a visit—attention to the surgical technique safeguards against these complications [18].
Despite their widespread occurrence and contrary to common belief, physical issues were not the most crucial determinant of low QoL, indicating patients were better prepared to deal with them. On the contrary, we found psychological factors to have the most profound effect on QoL, as pointed out by some other authors also [22]. Amongst such factors, anxiety was the commonest, followed by concerns about the underlying disease, pouch problems, and depression. Other psychological issues that have been reported are altered body image, hopelessness, stigmatization, isolation, and loneliness [16,23]. Sadly, most healthcare providers ignore these vital psychological concerns and only concentrate on the physical ones [22]. Recently, the awareness about them has increased, and many counter strategies have been proposed [22,24].
The spiritual well-being of an individual was also a primary focus of our study because we believe it to be an essential component of QoL[25]. A stoma could make it difficult for Muslims to maintain the cleanliness required to fulfill their religious obligations, requiring them to frequently go to the bathroom with many inconveniences. Patients are further discouraged from praying, fasting, and performing Hajj due to concerns about leaks and odors [26].
Since all the participants in our study were devout Muslims, our survey questions covered all the rituals typically observed by Muslims. Of the responders, 90% reported difficulties performing one or more religious activities, mainly keeping wudhu or attending mosque. These findings indicate that modern stoma appliances are not entirely foul-proof and need additional innovation. Furthermore, the instrument to measure patients’ performance in religious activities might require more precision.
Our regression analysis also confirmed religious factors to be the significant determinants of QoL. We thus concur with the other authors who recommend appropriate religious counseling for these patients [7,27,28].
Stoma patients often struggle with social dysfunction as well as sexual issues, both of which lower their QoL. Disinterest, avoiding social activities, restricted travel, strained personal relationships, loneliness, and a tendency toward isolation are the root causes of the former. These factors make adaptation and stoma management even more challenging. The fact that 44% of our patients exhibited social disturbances and our inference that sexual dysfunction negatively impacted QoL is commensurate with the evidence [22,23].This negative effect can be lessened by giving patients access to pertinent information and training and providing efficient community health services [7]
The majority of our patients (91 percent) were able to self-manage their stomas and live independently - thanks to the quality of care they received and the support of their family and friends. Their financial difficulties were also minimal due to the country's effective national health program.