Health-related Quality of Life Among Patients With an Ostomy Regarding Sex, Disease Diagnosis, Health Care Provider, and Ostomy Type

A Descriptive Cross-sectional Study

Ostomy surgery to create an opening (stoma) between an internal organ and the external surface of the skin is often indicated among patients who require alternative means of excreting waste. Ostomy sites include the small intestine (ileostomy) and bowel (colostomy), with the site determined by the specific pathology.¹ Ostomy surgery is a major surgical intervention for gastrointestinal illnesses such as Crohn’s disease,² complications from diverticulitis, and colorectal cancer.^1,3 More than 800,000 patients in North America have ostomies, with more than 120,000 new ostomies created annually in the United States and Canada.⁴ In the United Kingdom, there are approximately 100,000 persons with a colostomy, with a similar number in Germany. China has an estimated 1 million people living with an ostomy.^5,6 Notably, colectomy (removal of diseased bowel) with colostomy surgery increases the long-term survival rate of patients with colorectal cancer.⁶

Although considered a life-saving therapeutic intervention, ostomy surgery can result in significant quality of life (QOL) challenges for patients,^7,8 with several issues affecting their health-related quality of life (HRQOL).⁹ According to Davis et al,¹⁰ QOL refers to a subjective feeling that affects a person’s social, physical, psychological, and spiritual domains. The HRQOL of patients with ostomies is a significant concern⁷ and a vital outcome measure (along with surgical outcomes) for problem management, particularly with the increasing survival rate of patients with cancer.¹¹

There is broad research evidence of the multidimensional negative consequences of ostomy surgery on QOL.^11,12 The procedure negatively affects the physical, psychological, social, and spiritual well-being of patients.^12,13 Patients with ostomies often experience pouch leakage,^7,8,14,15 depression,^13,16 difficulties in social situations,^7,17 difficulties with sexual activities,^7,12,15,18 fatigue, and difficulty sleeping.^19,20 Also, ostomy formation often requires patients to change several aspects of their lifestyle, including diet, travel, social activity, and clothing.²¹ These factors can harm the QOL of patients with ostomies. Some studies have noted that HRQOL outcomes may vary according to sex²²; however, there is no conclusive evidence of this effect.²³ Furthermore, both permanent and temporary ostomies may lead to a variety of different physical and psychological issues that impact a patient’s HRQOL.¹⁰

There is a gap in the knowledge regarding the effect of ostomy type (permanent vs temporary), sex, disease diagnosis, and quality of care on the QOL of patients with ostomies in Arabic-speaking countries. Although the HRQOL of individuals with ostomies has been explored previously in relation to ostomy type,²⁴ sex,²⁵ and disease diagnosis,¹⁰ cultural diversity between populations may result in different reporting concerns concerning ostomy care. Thus, there is a need for more studies to deepen our understanding of the lived experience of individuals with ostomies in Saudi Arabia.²⁶ The singular beliefs, attitudes, and perceptions of Muslim women have a direct impact on how they receive health care by non-Muslim health care professionals who perhaps do not share the sensitivity of Islamic culture.²⁷ Nurses who understand the unique cultural beliefs of their patients can advocate more efficiently for their patients and deliver safe and comfortable care.²⁷ In Saudi Arabia, most nursing staff are not citizens of Saudi Arabia, and Western models of care are evident in all hospitals. Cultural differences make it difficult for non-Saudi, non-Muslim nurses to provide care that is fully appreciative of cultural aspects.²⁸

This study was conducted to understand the factors that affect QOL among patients with ostomies in Saudi Arabia to help provide a holistic assessment and management of individuals with stomas.²³ This article explores the QOL challenges of patients according to ostomy type (temporary vs permanent), sex, disease diagnosis (cancer vs non-cancer), and health care provider.

This study used a descriptive cross-sectional design, including analysis of secondary data collected in a primary study,²⁹ to explore the factors impacting QOL in Saudi Arabian participants with stomas. Project approval was obtained from the Research Ethics Committee, RMIT University (no. 21983), and was authorized by the hospitals and health care institutions where data were collected.

Data collection. Data collection was conducted at 5 outpatient surgical clinics of public hospitals in Riyadh, Saudi Arabia, from June 2019 to February 2020. A convenience sampling technique was used to recruit Saudi Arabian individuals with ostomies. The patient inclusion criteria were: 1) 18 years or older, 2) citizen of Saudi Arabia, 3) had an ostomy, 4) attended an ostomy outpatient surgical clinic, and 5) able to read and write Arabic.

Patients were recruited via posters placed in the outpatient waiting rooms of the selected hospitals. The posters included information about the study and instructions for obtaining the questionnaire (hard copy). The questionnaire was supplied with a participation information sheet, consent form, envelope, and cover sheet with instructions on where to deposit the completed questionnaire. The completed questionnaires and consent forms were enclosed in the envelopes and deposited in a marked locked collection box behind the outpatient waiting room reception desk.

All questionnaires were completed and returned on an anonymous basis, with no identifying information, to ensure confidentiality. To protect the rights of the participants, the consent informed the participants that the study was voluntary and that participants could drop out at any time. Not participating in or dropping out of the study would involve no penalty and would not affect their health care.

The estimated adequate sample size was 341, according to a margin of error of .05%, confidence level of 95%, and estimated population size of 3000. The estimated population size was based on the surgical outpatient clinic flow in the selected hospitals for a 6-month basis. Five hundred surveys were distributed to cover any incomplete surveys.

Instrument. Data were self-reported using the City of Hope–Quality of Life–Ostomy Questionnaire (COH-QOL-OQ) (Arabic version). The survey was distributed as a hard copy. The COH-QOL-OQ was developed by Grant et al³⁰ in 2004 to measure the QOL of patients with ostomies in the English language. The Arabic version was modified and translated to adapt to the language and cultural diversity of Arabic-speaking patients with stomas.²⁹ The COH-QOL-OQ (Arabic version) has acceptable reliability and validity for measuring QOL among Arabic-speaking patients with stomas.²⁹ The COH-QOL-OQ (Arabic version) consists of the following 4 domains: physical well-being, psychological well-being, social well-being, and spiritual well-being. In addition, sociodemographic data—including sex, age, marital status, disease diagnosis, and ostomy type (permanent vs temporary)—were collected, along with data on postoperative care and lifestyle changes following ostomy surgery.

Data analysis. Data were analyzed using SPSS version 25 (IBM Corp).The data were “cleaned” (fixing incorrect, incomplete, duplicate, or otherwise erroneous data in a data set), and descriptive statistics (mean, standard deviation (SD), frequency, and percentage) were obtained to describe the sociodemographic and surgical history of the patients. All P values were 2-sided, and statistical significance was set at a 95% confidence level (P ≤ .05). The main bivariate statistical analysis techniques for testing the research questions were independent samples t tests and one-way analysis of variance.

Of the 500 distributed surveys, 421 were completed and returned (84% response rate). The sociodemographic characteristics of respondents are given in Table 1. The respondents were from 5 health care institutions (A–E), with the greatest number from health care institution B (26%) and the fewest from health care institution E (14%). The majority were male (57%) and aged over 40 years (58%). Most of the respondents’ ostomies were indicated for colon or rectal cancer (56%), while non-cancer diagnoses (Chron’s disease, ulcerative colitis, or other non-cancer) accounted for 44% of cases. Approximately half were temporary ostomies (50%) and half permanent ostomies (49%), while 4 patients were unaware of their ostomy type (1%).

In terms of clinical characteristics, more than half reported not belonging to a support group (71%), and most (89%) had no opportunity to contact other individuals with ostomies. Approximately 67% had changed their clothing style following ostomy surgery. Seventy percent of respondents had changed their diet to minimize flatulence, especially in public settings. Most patients reported that it took them months (as opposed to years or never) to feel comfortable with their daily ostomy care and diet and for their appetite to return.

The COH-QOL-OQ (Arabic version) scores are scaled from 0 to 10 for several items relating to physical, psychological, social, and spiritual well-being. Quantitative analysis of the scores was conducted to calculate the mean scores for overall QOL and each of the 4 dimensions of well-being. The average score for overall QOL was 7.7 for men and 7.4 for women, with average subscale scores ranging from 6.4 for physical well-being to 8.7 for psychological well-being. Women had a lower mean score than men in all 4 QOL dimensions, which shows significant impact in their QOL (Table 2). Of the 4 QOL dimensions, both men and women scored lowest for physical well-being.

There were significant differences in the mean QOL scores between patients with permanent and temporary ostomies; those with temporary ostomies had a lower mean overall QOL score (mean = 6.8; SD = 1.1) than those with permanent ostomies (mean = 8.2; SD = 2.5), and there were significant differences in all 4 QOL dimensions between the 2 groups (Table 3 and Table 4). In relation to health care facility, patients receiving care at health care institution B had significantly higher QOL scores than patients at other health care facilities (Table 4). There were no significant differences in QOL scores by disease diagnosis (Table 5).

Information regarding the HRQOL of patients with ostomies in relation to sociodemographic and clinical factors can help to improve our understanding of their status and requirements for health care provision. This study highlights the differences in HRQOL by sex, ostomy type, disease diagnosis, and health care provider.

QOL in relation to ostomy type (permanent vs temporary). Research indicates that patients with stomas may struggle to adapt to their new anatomy, manage their ostomy, and continue their regular daily and social activities.³¹ Furthermore, patients with temporary stomas experience different challenges than those with permanent stomas, which could impair their QOL.¹⁷ Our results support the notion that ostomy type (permanent vs temporary) affects the HRQOL of patients. Patients with permanent ostomies had significantly higher mean QOL scores than those with temporary ostomies. Smith et al²⁴ found that overall QOL increased with time for patients with permanent stomas, but not for those with temporary stomas. Similarly, Knowles et al² reported that patients with temporary stomas experienced more psychological problems than those with permanent stomas. In contrast, deGouveia Santos et al³² identified no significant differences in overall QOL scores between patients with permanent and temporary stomas.

Patients adapt to their stoma over time, which may explain the higher QOL scores for patients with permanent ostomies compared to those with temporary ostomies.² Other studies have suggested that the coping strategies of individuals with temporary ostomies are more likely to be ineffective, while patients with permanent ostomies develop more effective coping strategies.^9,24,33 This may be one reason for the increased QOL scores of people with permanent stomas. However, this study’s findings demonstrate that physical, psychological, social, and spiritual problems differ significantly with ostomy type.

QOL in relation to sex. Sex variations have been identified in coping processes and adaptation to chronic disease.²² Women demonstrate more coping behaviors and seek more social and emotional support than men. However, female patients with ostomies report poorer QOL scores than male patients, particularly with regard to physical well-being.²² Another study on sex differences in QOL illustrated that male patients adjust better to life after ostomy surgery than female patients.²⁵ Similarly, in the current study, there were differences in QOL scores by sex, with women reporting lower mean scores in all 4 QOL dimensions. Comparable results were found in a cross-sectional study by Krouse et al,²² which compared the QOL of patients with ostomies with respect to sex. Women with stomas scored consistently lower in QOL tests than men in the domains of physical, psychological, social, and spiritual well-being.^22,23 Grant et al²⁵ performed a qualitative study that identified several challenges common for both sexes, such as diet management, physical activities, social support, and sexual performance; however, women reported experiencing more specific challenges than men in psychological and social areas owing to concerns about body image and difficulties related to employment. The impact of sex on QOL might be related to sex-based differences in self-care and organization practices. Women have been reported to be more proactive in stoma care than men, which may relate to a tendency to focus more on their appearance.⁷ Sex may affect the QOL of individuals with stomas because of such variations.

QOL in relation to disease diagnosis. This study compared the overall HRQOL of patients with ostomies depending on the reason for ostomy surgery (cancer vs non-cancer diagnosis). We found no significant differences in QOL scores between patients with cancer and non-cancer diagnoses in any of the 4 QOL dimensions. Similar results have been reported previously, with several studies reporting no significant differences in QOL among patients with ostomies indicated for inflammatory bowel disease, colorectal cancer, or other diagnoses.^10,34-36 In contrast, Jansen et al²⁰ noted a significant difference in HRQOL in patients with ostomies depending on their disease diagnosis, with higher QOL scores reported by patients with cancer than those with non-cancer diagnoses. Krouse et al³⁷ similarly found that patients with cancer-related colostomies reported better QOL outcomes than those with non-cancer-related colostomies. Furthermore, patients who undergo ostomy surgery for Crohn’s disease have been reported to experience high levels of anxiety and depression.² The contrasting findings of these studies most likely relate to the different population backgrounds and treatment resources.

QOL in relation to health care facility (availability of certified ostomy nurse). Another key objective of this study was to gain more insight into HRQOL in people with ostomies in relation to the health care provider. The study participants were from 5 hospitals that provide tertiary care from large referral or specialist centers in Riyadh, the largest city in Saudi Arabia by population and area. The QOL scores of patients from hospital B were significantly higher than those of patients from the other 4 health care providers in all 4 QOL dimensions.

The World Health Organization has suggested an association between QOL and health services for individuals and populations, with the health outcomes of an individual affected by the evidence-based knowledge of the health care professionals who treat them.³⁸ Canova et al³⁵ investigated the QOL of patients with ostomies from health care organizations in different areas of Italy. Their findings suggested that differences in QOL can emerge owing to differences in postoperative nursing care, community support systems, applied management, and the quality of services offered, which provides insight into the potential relationship between health care provider and overall QOL of patients with ostomies.³⁵

In our study, only 1 of 5 hospitals (hospital B) had a certified ostomy nurse, while the others had a registered nurse who worked as an ostomy nurse. Furthermore, the highest QOL scores were among participants who were receiving care at hospital B. This resonates with previous findings that patients with ostomies report better QOL scores when they have access to specialist ostomy care services.³⁹ This is further supported by the results of Marquis et al,⁴⁰ which indicated a positive relationship between the availability of ostomy nurse specialists and QOL scores among people with ostomies. Another quasi-experimental study indicated that follow-up with an ostomy nurse specialist after discharge significantly improved the patients’ scores in all 4 QOL dimensions.⁴¹

Social isolation is one of the greatest challenges for individuals following ostomy surgery. Nichols⁴² reported a statistically significant and clinically relevant role of ostomy nurse specialists in rehabilitating people with ostomies. Ostomy nurse specialists support patients to improve social interaction and connections. However, the measurement tool used by Nichols did not specifically inquire about the role of ostomy nurses or whether patients undertook an educational program; the researcher relied on nursing department information about the availability of ostomy nurse specialists.⁴² Nevertheless, several other studies have found that the availability of ostomy nurse specialists benefits people with ostomies and correlates with increased QOL scores.^26,41,43 Therefore, adequate ostomy care by specialist ostomy nurses seems important for good QOL. A specialized ostomy nurse should perform preoperative and postoperative care to prevent ostomy complications and promote QOL after ostomy surgery.

The findings of the current study demonstrate that sex and ostomy type (permanent vs temporary) significantly impact the HRQOL of patients with ostomies. This observation needs to be highlighted when patients with ostomies receive counseling regarding the challenges they may face after ostomy surgery. In particular, nursing care should not only include physical, psychological, social, and spiritual counseling, but should also be tailored to the sex and ostomy type of the patient. The findings from this study may help in planning group support and other clinical interventions to help patients adapt to their ostomies. The provided content should include specific aspects that patients may struggle with because of their sex. For women, sleep disruption, depression, and body image problems should be emphasized. In addition, nursing professionals should tailor adaptation counseling, ostomy equipment, and other individual problems in follow-up appointments to the ostomy type (permanent or temporary) of the patient to help to reduce enduring challenges. In addition, interdisciplinary team members such as community nurses should acquire specialized knowledge, skills, and training on stoma care to facilitate the provision of personalized and high-quality care to patients with stomas. This understanding can help nurses to develop more effective treatment plans and increase the quality of care received by patients with stomas.¹⁰ 

One of the main limitations of this study is that the respondents were mainly Saudi Arabian, which may affect the generalizability of the results to other Arabic-speaking populations depending on how they perceive the translated version of the COH-QOL-OQ. The study also covered only one city in Saudi Arabia, and the patient groups were all from public hospitals, as the selected health care facilities did not include private hospitals. Therefore, the results may not be applicable to other parts of Saudi Arabia or to private health care patients because of cultural differences. Another limitation is the patient recruitment method: the convenience sample of self-reported Saudi Arabian citizens may not be representative of the population.

This descriptive cross-sectional study explored predictors of QOL among patients with ostomies in Saudi Arabia. Different indicators—such as ostomy type, sex, disease diagnosis, and health care provider—may be used to measure overall well-being among patients with ostomies. The lifestyle changes required following ostomy surgery (such as changes to clothing and diet) can impact the QOL of patients. This is consistent regardless of ostomy type (permanent vs temporary), patient sex, and disease diagnosis (cancer vs non-cancer). These observations need to be considered when patients undergo ostomy surgy. Preoperative and postoperative counseling and support regarding the possible issues after ostomy surgery should be provided to reduce potential complications and improve the HRQOL of patients.

To the best of the authors’ knowledge, this study is one of the first to explore overall QOL for patients with ostomies in Saudi Arabia. The findings may assist in developing intervention strategies to improve the HRQOL of patients with stomas in Saudi Arabia. Further studies are recommended to examine each of the QOL dimensions and associated predictors, and the role of ostomy nurse specialists in how patients cope with and adjust to their stoma. Maintaining sexual relationships also plays a role in improving QOL; therefore, research in this area is necessary to provide a more complete understanding of the consequences of ostomy surgery on the QOL of patients with ostomies in Saudi Arabia. ν

Aishah Alenezi, MSN, RN, PhD¹; Amanda Kimpton, PhD²; Karen Livesay, PhD³; and Ian McGrath, PhD⁴

¹PhD candidate, Nursing Department, RMIT University, Australia
²Senior lecturer, Chiropractic and Exercise Sciences Department, RMIT University, Australia
³Associate professor, Nursing Department, RMIT University, Australia
⁴Senior lecturer, Nursing Department, RMIT University, Australia

Address all correspondence to: Aishah Alenezi, PhD Cand, RMIT University, 113/ 13 Bush Blvd, Mill Park, VIC, AU; email: f4aisha@hotmail.com
The data that support the findings of this study are available from the corresponding author upon reasonable request.

None disclosed