A Descriptive Study to Assess Quality of Life in Egyptian Patients With a Stoma
The creation of a stoma changes bodily appearance and function, which can affect quality of life (QOL). A descriptive study using the Short Form 36 (SF-36) questionnaire, an instrument that measures 8 physical and mental health concepts, was conducted to quantify QOL among patients with a stoma and to interpret how stoma creation affects their lives.
Participants included a convenience sample of persons served by an outpatient surgery clinic in an Egyptian university hospital in Cairo between August 2013 and January 2015. Potential participants had to be 18 years of age or older, have undergone intestinal stoma surgery, live at home, be willing to participate, and not be hospitalized or have physical or psychological limitations that prevent them from participating in self-care. General demographic data and disease characteristics/reasons for stoma creation collected included age, gender, and marital status; stoma type, design, and duration; and stoma problems/complications. Every patient completed the questionnaire individually or, if necessary, with the researcher’s assistance; the interview took approximately 10 to 15 minutes. Demographic data were collected after stoma creation from the patient’s medical profiles using a predesigned form. The SF-36 scores were linearly converted to a 0 to 100 scale, with higher scores indicating better QOL; scores were considered excellent (100), very good (84–99), good (61–83), fair (25–60), and poor (0–24). Data were analyzed using descriptive analysis. Independent sample t-tests and 1-way analysis of variance tests were used to compare variables, and a 2-tailed probability value of 0.05 was used to determine the level of significance. Mean age of the 96 participants was 44.12 ± 12.83 years, and most participants were male (58.33%), married (87.5%), and had a permanent stoma (60.42%) with mean stoma duration of 2.86 ± 0.43 years. The majority of patients (68.75%) had a colostomy. All patients (100%) reported 1 or more problems related to their stoma, including finding privacy to empty the pouch (51), problems with leakage (37), the need to adapt their clothing (69), local skin irritation (28), the presence of offensive odor and/or bowel noise (90), and difficulties participating in social activities (72). Most of the QOL subscales were in the fair QOL category range (between 49.55 ± 31.59 and 59.54 ± 30). Compared to persons with a temporary stoma, participants with a permanent stoma had significantly higher physical role function scores (38.76 ± 33.30 versus 70.92 ± 35.59; P <.05). Patients with a stoma constructed due to trauma had higher general health scale scores than persons with a stoma constructed due to inflammatory bowel disease or colon cancer (mean [SD] 61.6 ± 31.75, 57.14 ± 26.26, and 46.55 ± 30.85, respectively; P <.05). Ostomy-specific QOL studies are needed to increase understanding about the needs of stoma patients in Egypt; the results of this study suggest their QOL is not good and improvements in proper perioperative counseling and specialized nursing care may be needed.
The creation of a stoma changes bodily appearance and function.1 An intestinal stoma is constructed for several disease-related reasons, including acute diverticulitis, colon cancer, trauma, or inflammatory bowel disease (IBD),2-4 where the treatment or palliation of the patient leads to a need to divert fecal flow. The stoma can be either temporary or permanent and may be constructed in the small intestine or the colon (an ileostomy or a colostomy, respectively4), subsequently creating many challenges in terms of quality of life (QOL) and function. In a colostomy and an ileostomy, normal bowel function is diverted through the abdominal wall through an opening (the stoma) into an appliance that must be emptied periodically.5
Ostomy surgery is performed to reduce patients’ pain and discomfort relative to the precipitating condition5; a patient’s opinion of his/her well-being and functional status, as measured by QOL, is an important consideration.6 Ostomy surgery has a great influence on a patient’s daily life and in many cases leads to intensified distress and suffering for patients, causing severe stress2 as related to skin irritation, pouch leakage, offensive odor, reduction in pleasurable activities, pain, and depression/anxiety, according to a descriptive study (N = 34) conducted by Richbourg et al.7 It is important to assess QOL in the evaluation of the ostomy-related outcomes and determine its impact on patients’ lives.
QOL instruments have been developed to help elucidate the patient’s point of view and to critically judge the results of treatment for many diseases. Most studies investigating QOL in stoma patients use generic or cancer-related QOL questionnaires, such as European Organization for Research and Treatment of Cancer, Quality of Life Questionnaire, Functional Assessment of Cancer Therapy-General, or Short-Form 36 (SF-36) questionnaires.8-10 Unfortunately, no general/disease-specific QOL measurement instrument is available for the Egyptian population.
The SF-36 includes 8 health concepts: physical functioning (assesses limitations to daily activities such as climbing stairs or lifting groceries), role limitation due to physical health problems (assesses limitations in work/activities due to physical health), bodily pain, general health, vitality (assesses energy and fatigue), social functioning, role limitations due to emotional health (assesses limitations in work/activities due to mental health), and mental health (assesses anxiety and depression).11 This health survey was created to achieve minimum standards of precision necessary for group comparison; the score generated is useful in understanding population differences in physical and mental health status, the health burden of chronic disease and other medical conditions, and the effect of treatments on general health status.12
The purpose of this study was to quantify the level of QOL among persons with an intestinal stoma using the SF-36 questionnaire and explore how stoma creation affects patients in Egypt.
Materials and Methods
Patients. A convenience sample of patients with a stoma was selected from persons served by an outpatient surgery clinic in an Egyptian university hospital located in Cairo between August 2013 and January 2015. The inclusion criteria stipulated participants must be 18 years of age or older, have an intestinal stoma regardless of precipitating cause, live at home (ie, not in a nursing home or long-term care facility), and be willing to participate. Hospitalized patients and persons with a physical or psychological limitation that would prevent them from participating in self-care were excluded.
Ethical consideration. The research procedures were approved by the local institutional ethics committee of the university hospital, and the research was conducted according to the standards of the World Medical Association Declaration of Helsinki.13 Written informed consent was obtained from patients who agreed to participate before enrollment into the study. Patients were assured that nonparticipation had no consequences for their follow-up care or treatment. All participants were informed of the purpose of the research.
Instruments. Demographic and medical data were retrieved from each patient’s medical record using a predesigned form and included age, gender, marriage, indication for construction of a stoma (underlying disease), stoma type (temporary or permanent and colostomy or ileostomy), design of the stoma (loop or end), complications and/or problems caused by the stoma, and length of time since stoma creation. Problems included finding privacy to empty the pouch, leakage, the need to adapt their clothing, local skin irritation, the presence of offensive odor and/or bowel noise, and difficulties participating in social activities.
The SF-36 questionnaire was translated into Arabic by a professional translator but was not validated. The translation incorporated local Egyptian society and lifestyle. No patient expressed any difficulty in understanding the translation.
Participants completed the questionnaire during their outpatient visit before they were asked about health problems and concurrent illness to avoid any influences on their answers. The questionnaire took approximately 10 to 15 minutes to complete. If a patient could not read or write, the investigator read the questionnaire and recorded the responses from the patients. The investigator checked each questionnaire immediately upon completion to ensure all questions were answered. Patients with a temporary stoma were asked to complete the questionnaire at the time the stoma was reversed.
All scores were linearly converted to a 0 to 100 scale according to standard scoring procedures,11 with higher scores indicating better QOL. Scores were categorized according to SF-36 standards as excellent (100), very good (84–99), good (61–83), fair (25–60), and poor (0–24).
Data collection and analysis. Completed questionnaires and the predesigned form for retrieval of patient data from the medical profiles were kept in locked files until the time of data analysis; patient anonymity was maintained. All patients were asked to complete the questionnaire individually and in privacy. Data were analyzed using SPSS for Windows, version 16.0 (SPSS Inc, Chicago, IL). A 2-tailed probability value of 0.05 was used to determine the level of significance. Descriptive analysis was performed; continuous variables were reported using means and standard deviations, and categorical data were presented as numbers and percentages. An independent sample t-test was used to compare QOL mean scores between colostomy and ileostomy patients, patients with temporary versus permanent stoma, men versus women, and patients with a loop versus an end stoma. A 1-way analysis of variance (ANOVA) test was used to analyze the relationship between different indications for constructing a stoma and QOL mean scores — ie, the statistician used both t-test and the 1-way ANOVA, because he found no violations and normality was assumed, with no need to use a nonparametric test.
Patients characteristics. Participants included 96 patients: 56 (58.33%) men, 84 participants (87.5%) were married, and mean patient age was 44.12 ± 12.83 (range 18–73) years. The majority of patients (66, 68.75%) had a colostomy, and most participants (58, 60.42%) had a permanent stoma (see Table 1). The mean duration between stoma creation and the time of the study was 1.79 ± 1.31 years. Stoma creation in patients with a permanent stoma occurred an average of 2.86 ± 0.43 years before; in patients with a temporary stoma, time since surgery was an average of 0.81 ± 0.17 years.
All of the patients (100%) reported 1 or more complications and/or problems, which included difficulties finding privacy to empty the pouch (51), leakage (37), the need to adapt their clothing (69), local skin irritation (28), the presence of offensive odor and/or bowel noise (90), and difficulties participating in social activities (72). None of the participants reported infections or hernia. Sixty-one (61) patients with a colostomy needed to adapt their clothing.
QOL. The QOL subscale scores fell into the “fair” category with the exception of the role-physical and bodily pain subscore scales, which were categorized as “good.” The mean subscale scores were as follows: general health — 49.16 ± 31.59, physical function — 52.6 ± 24.48, role-physical function — 67.81 ± 30.86, bodily pain — 71.64 ± 27.51, vitality — 57.54 ± 23.23, social function — 52.19 ± 41.4, role-emotional function — 50.83 ± 44.09, and mental health — 59.54 ± 30.
No significant difference was found between patients with a colostomy versus an ileostomy on any of the QOL subscales except for physical function; patients with a colostomy had a significantly higher physical function score (mean 87.34 ± 19.52) compared to patients with an ileostomy (mean 69.68 ± 32.53) (P <.05).
As compared to a temporary stoma, the presence of a permanent stoma was significantly associated with better role-physical function, role-emotional function, bodily pain, and general health (P <.05). Mean scores of the QOL subscales in patients with a permanent stoma included role-physical function (70.92 ± 35.59), role-emotional function (56.85 ± 46.96), bodily pain (72.92 ± 28.53), and general health (51.81 ± 31.79). Mean scores in patients with a temporary stoma were 38.76 ± 33.30, 48.57 ± 42.25, 52.14 ± 23.35 and 45.76 ± 27.64, respectively (see Figure 1).
Gender had no significant effect on any of the items of the SF-36 questionnaire with 1 exception: women scored significantly better than men with regard to social function (mean 57.86 ± 43.75 versus 47.7 ± 39.39; P <.05).
When the QOL scores of patients with a loop versus an end stoma were compared, significant differences in physical role function and mental health were noted (P <.05). Patients with an end stoma had better role-physical function and mental health scores than those with a loop stoma (means 70 ± 34.27 versus 55.2 ± 38.72 and 62.51 ± 29.83 versus 48.50 ± 29.75, respectively).
Higher physical function scores were observed in patients with a stoma constructed due to IBD (mean 89.25 ± 20.29) than in patients with a stoma constructed due to trauma (mean 85 ± 25.98), followed by stoma surgery due to colon cancer (mean 82.41 ± 25.32) (see Table 2). Patients with a stoma constructed due to trauma had higher scores than patients with a stoma constructed due to IBD or colon cancer for general health, vitality, social function, and role-emotional function (mean 61.6 ± 31.75, 74 ± 12.16, 67.5 ± 47.63, and 73.3 ± 46.18, respectively for trauma; 57.14 ± 26.26, 60.71 ± 22.24, 63.57 ± 35.87, and 69.28 ± 33.39, respectively, for IBD; and 46.55 ± 30.85, 53.62 ± 25.45, 50.62 ± 43.81, and 49.48 ± 47.72, respectively, for colon cancer) (see Table 2).
The creation of an intestinal stoma results in changes in physical appearance and bodily function, can disrupt a number of aspects of the patients’ lives,2,12 and may affect their QOL.2,7,14-18 This study explored the impact of stoma creation on Egyptian patients’ QOL using the SF-36, where it was found the majority of patients had fair QOL. Only the role-physical function and bodily pain subscale scores fell within the good category range.
Several factors may have contributed to the social and physical isolation of these patients, including problems with leakage, the presence of offensive odor and/or bowel noise, and the need to adapt their clothing. The latter issue was observed more in patients with colostomy than in those with ileostomy. These findings are consistent with results of a retrospective study by Nugent et al19 (N = 542) conducted in the United Kingdom that showed patients have difficulties adjusting their lives to the stoma due to different contributing factors. These authors found patients with a colostomy had a better physical function score than those with an ileostomy, which is in accordance with current findings. The researchers propose that if a stoma department had been available, preoperative assessment and counseling with longer follow-up would have been provided and helpful in the management of patients and probably would have contributed to the improvement of their QOL, as reported by research that included qualitative, descriptive, and retrospective studies.2,7,20-28
A “fair” mental health score reported in the current study implies the patient does not feel peaceful, happy, and calm all of the time.2,5 An explanation for the low mental health score in the present study might be the worry and depression experienced by the patients due to the offensive odor and bowel noise, conjecture supported by qualitative, cross-sectional, and phenomenological research.5,14,15 On the other hand, the presence of a stoma did not cause significant pain for the patients in the present study.
Passage of time may be the most important factor in adapting successfully to life with an ostomy.5 In the present study, stoma creation in patients with permanent stoma occurred an average of 2.86 ± 0.43 years before and they reported a significantly better QOL than persons with a temporary stoma in whom stoma creation occurred an average of 0.81 ± 0.17 years before the time of the study. These findings are in accordance with recently published data from the qualitative study by Dabirian et al,5 showing many problems reported by the participants were related to the early period after surgery and before most of them had adapted and coped with their ostomy-related problems. A retrospective study (N = 1061)20 found many of the problems such as changes in body appearance, anxiety about fecal leakage from the ostomy bag, bad smell, and sudden sounds decreased over time, findings supported by current results.
A retrospective study20 (N = 1061) and a meta-analysis conducted by Bossema et al22 showed QOL was higher in patients who had the stoma for some time, which is consistent with the data presented in the current study.
In the present study, gender influenced QOL significantly in the domain of social function; women had higher QOL scores than men. This may be due to gender differences in regular social activities. In the Egyptian community, men more commonly go to the mosque to pray 5 times daily and participate in social activities and exercise. Mosque prayers require cleanliness, fitness, and to be free of any fecal material — in Islam, the presence of any fecal material can interfere with praying, so persons should be completely clean and free of any fecal material in order to perform their prayers. These requirements are affected by the presence of an ostomy, exacerbating social isolation.5 This perception (unclean ostomy) should be addressed by the Islamic community. The recent finding is similar to results of a recently published cohort study by Liao and Qin8 that found women had a better QOL, but gender was not a strong predictor.
Patients with an end stoma had higher role-physical function and mental health scores than persons with a loop stoma. This might be explained by the observation that the majority of patients with a loop stoma (26 patients, 70.27%) had an ileostomy, which had a higher rate of complications and lower associated QOL than a colostomy. These data are in accordance with a recently published national, cross-sectional study by Schiergens et al.29
Patients with a stoma constructed due to trauma had higher QOL scores than persons whose ostomy was constructed due to other factors. This might be explained by the effects of the underlying diseases observed (IBD and colon cancer) among patients in the present study.
In the current study, patients with a colostomy who were elderly and had colon cancer did not report experiencing the same magnitude of symptoms as patients with IBD before stoma creation. However, the range of responses did not significantly impact QOL for patients with an ileostomy versus a colostomy.
In Egypt, the absence of established specific patient education programs aimed at rehabilitation and adaptation to life with a stoma and the absence of specialist nurses within the field of stoma care may have negatively affected QOL of the patients.19,26-28 The potential role of nurses in educating, training, and providing guidance for stoma patients in Egypt should be explored. The results of the present study suggest that establishing counseling opportunities and group discussions in the Egyptian community would help patients with a stoma better cope with life after ostomy.19,26-28 Future studies should focus on constructing an Egyptian version of a stoma-specific QOL instrument and examining its potential use in routine clinical practice.
Although this study provided an assessment of the QOL outcome in Egyptian patients, an Egyptian, stoma-specific QOL instrument is needed in order to gain further insight into the issues of most concern to Egyptian stoma patients. This instrument should take into account the difference in the psyche and the socioeconomic status of the author’s patients and patients in the western sphere of the globe. Another limitation is the lack of a control group (people without a stoma) to compare with or measure the QOL in the same patients included in the study before stoma creation.
A descriptive, prospective study of Egyptian patients with a stoma showed they generally have a fair QOL. Patients with a permanent stoma had higher QOL scores than those with temporary ones. Participants with a temporary stoma and patients whose stoma creation as trauma-related had significantly higher general health scale scores than persons who had an underlying disease. Additional research and an ostomy-specific QOL assessment tool may help patients and their providers better understand the adaptations necessary to improve QOL.
The author acknowledges the efforts made by the staff of the surgery unit in the university hospital. The author is grateful to all of the patients, families and caregivers for participating in this study.
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Potential Conflicts of Interest: none disclosed
Dr. Boraii is a consultant surgeon, National Hepatology and Tropical Medicine Research Institute, Cairo, Egypt. Please address correspondence to: Sherif Boraii, MD, MRCS, 10A Kasr Al-Aini Street, Cairo, Egypt; email: firstname.lastname@example.org.