Quality of life in men after total cystoprostatectomy: Perceptions of Tunisian patients

Abstract

Introduction

Total cystoprostatectomy (TCP) causes many changes in the postoperative quality of life leading to psychological, physical, social and sexual repercussions that are difficult to manage. This study aims to describe the postoperative quality of life of elderly Tunisian men who had a TCP as a result of a bladder cancer.

Methods

A descriptive quantitative study was conducted with 40 cystoprostatectomized men. Data collection tools were the Stoma-quality of life (QOL) questionnaire of Prieto, Thorsen, and Juul (2005) translated and validated to the Arabic language, and the Arabic version of the International Index of Erectile Function (IIEF5) questionnaire validated by Shamloul, Ghanem and Abou-Zeid (2004).

Results

77.5% of participants had a very low quality-of-life score. All dimensions of quality of life—body image, physical, psychological, family and social life, and sexuality—were affected. In addition, all participants have suffered from severe sexual impotence after surgery.

Conclusion

Counselling pre and postoperatively needed to facilitate the postoperative transition and ensure a better quality of life related to the health of men with bladder cancer.

INTRODUCTION

Bladder cancer tends to be more common in men than women and incidence increases with age. It mainly affects people over the age of 65 (Canadian Cancer Society [CCS], 2018).

Bladder cancer is closely associated with smoking and exposure to certain chemicals (Khouidhi et al., 2011). Total cystoprostatectomy (TCP) with urinary diversion through the ileal duct is the most common surgical treatment for this type of cancer (Kamat et al., 2016; Witjes et al., 2014). Although it leads to patient survival, this procedure has several consequences, including lengthening the recovery period. Cystoprostatectomy impairs the postoperative physical, psychological and sexual quality of life of patients (Mak et al., 2016; Modh, Mulhal, & Gilbert, 2014). Fear, distress and depression (Ren, Tang, Zhao, & Ren, 2017) can add to the deteriorated quality of life. It is, therefore, essential to provide patients with appropriate nursing care, including pre- and postoperative counselling.

LITERATURE REVIEW

In terms of prevalence, bladder cancer ranks seventh among cancers, with 442,129 new cases and 176,559 deaths estimated worldwide in 2018 (Globocan, 2018). This cancer is relatively common in developed countries, where 60% of cases occur in men (Ferlay et al., 2015). It usually affects people older than 65 years of age (CCS, 2018).

In Tunisia, bladder cancer in men is the second most common form of cancer (after lung cancer), with an incidence of 15.6 cases per 100,000 (Cherif et al., 2015). According to Sallami et al. (2011), bladder cancer occurs most frequently in patients older than 60 years of age, and the standard treatment is total cystoprostatectomy (TCP) with external urinary diversion. This procedure consists of the complete removal of the bladder, lymph nodes, and certain neighbouring organs (prostate and seminal glands), followed by a transileal external urinary diversion (Briker, 1950; Lance & Grossman, 2001; Peyromaure, Guerin, Zerbib, & Bouchot, 2002).

Although TCP with external urinary diversion is an acceptable solution for surgeons, it is feared by patients. It modifies and disrupts self-image and quality of life (Ali, Hayes, Birch, Dudderidge, & Somani, 2015; Gosset, Simler, & Davic, 2007). In fact, several studies have shown that ostomy profoundly affects patient quality of life, psychological state, and postoperative sexuality (Kandemir & Oskay, 2017). The phenomenological qualitative study conducted by Kandemir and Oskay (2017) described the experience of men who have undergone urostomy as a result of bladder cancer. The analysis of interviews highlighted the impact of urostomy on sexual life, through erectile dysfunction, ejaculation disorder, urine leakage during sexual intercourse, or the inability to reach orgasm or feel pleasure.

Every patient with external urinary diversion seems to suffer from specific difficulties described by Hubbard et al. (2017), including: weakened body image and self-confidence, fatigue, decreased physical activity, discomfort, other difficulties caused by pouch leakage and odours, sexual problems, and difficulty communicating with health professionals.

In light of these results, it can be said that TCP causes physical, psychological, social, and sexual changes in men. This study, therefore, aims to describe the postoperative quality of life of cystoprostatectomized men.

METHODS

Research design

This is a descriptive quantitative study.

Study environment

Data collection took place over eight months in the urology outpatient department of the Sahloul University Hospital Centre in the Sousse region of Tunisia.

Sampling

The target population was men with bladder cancer who had cystoprostatectomy in the urology department in Sahloul. The sample (N=40) is a non-probability and accidental sample (Fortin & Gagnon, 2016). As per this sampling method, subjects were selected based on their availability. It is, therefore, difficult to assess the representativeness of our sample. However, its representativeness was strengthened through controls including homogeneity, which was made possible by restraining the selection criteria (Kerlinger, 1973).

The inclusion criteria were the following: (1) having undergone a cystoprostatectomy with Briker-type external urinary diversion at least one month, but less than 12 months ago; (2) being older than 60 years of age; (3) speaking Arabic or French; (4) freely agreeing to participate in the study by signing the consent form; (5) having not undergone surgery to treat another condition that would affect quality of life. A total of 40 elderly men participated in our study.

Data collection tools

1. Quality of life assessment

The quality of life of ostomates was measured using the Stoma-QOL questionnaire. The latter is intended for people with ileostomy, colostomy, or urostomy. This questionnaire was developed in 2001 by Prieto, Thorsen and Juul (2005), and includes 20 items covering the following five areas: sleep, general activity, sexuality, relationships with family and close friends, and social relationships. Respondents are asked to rate their answers on a four-point Likert scale, where “always” = 1 point and “not at all” = 4 points. The sum provides a single standard score between 20 and 80 points.

The Stoma-QOL questionnaire was translated into Arabic and revalidated to facilitate the participation of Tunisians and to ensure that respondents understood the items in the questionnaire. The translation used a method inspired from a cross-cultural validation of Vellerand’s (1989) psychological questionnaires. The back-translation technique was used, as several authors consider it to be the most appropriate method (Caron, 2006; Lachapelle et al., 2000; Vellerand, 1989). All three versions of the questionnaire were submitted to a committee of bilingual experts, who analyzed the translations and verified the conceptual equivalence of the translated statements (Caron, 2006). The resulting Content Validity Index (CVI) was 0.82. The accuracy of the instrument was determined by its internal consistency, with a Cronbach alpha of 0.87. According to Fortin and Gagnon (2016), these values indicate that the translated questionnaire had a good validity and reliability score.

2. Assessment of sexual activity

The International Index of Erectile Function 5 (IIEF5) (Rosen et al., 1997) is a 5question self-assessment questionnaire; each answer is rated from 0 to 4 or 5. IIEF5 is used to evaluate erectile dysfunction in a semi-quantified way. This study used the Arabic version of this questionnaire, validated by Shamloul, Ghanem, and Abou-Zeid (2004), the internal consistency of which was 0.91.

Ethical considerations

After the study received the approval of the ethics board at the Sahloul University Hospital, participants were provided with an information sheet explaining the research project (i.e., the purpose and steps of the study, risks and side effects, potential benefits and drawbacks to participants, and confidentiality/anonymity). Participants were then required to sign a consent form. To ensure confidentiality, no personal information was collected during the data collection process.

PROCEDURE

The head of department, nurses and the principal investigator jointly developed a schedule for the research activities in the field. The research project in this particular care setting was well received. The cystoprostatectomized men contacted were followed in an outpatient urology clinic.

It is in this environment that the research project was presented to patients. After an introduction, patients wishing to take part in the study were greeted by the researcher in a dedicated room. The researcher further explained the study and handed out an information sheet. Patients were free to withdraw from the study at any time, to terminate their participation or to come back to the study after reflection.

DATA ANALYSIS

The data collected were processed with version 20 of the SPSS software (Jamalludin Ab & SpringerLink, 2015). The socio-demographic characteristics of patients, the severity of their impotence and their quality of life were described using frequency distributions.

RESULTS

A total of 40 questionnaires were mailed to men who had undergone operations in the last two years (1 to 18 months before the study) for bladder cancer with a Briker-type external diversion.

PARTICIPANT DEMOGRAPHICS

The average age of cystoprostatectomized men was 68.43 years (min=60, max=86). Most were between 60 and 70 years of age (68.5%), though five men were between 71 and 80 years (12.5%), and six were older than 80 years of age (19%). Sixty-five percent of respondents reported having a spouse and 35% were widowers. In 67.5% of cases, TCP had been performed between one and six months before the study (Table 1).

Table 1.

Distribution by socio-demographic characteristics

	Number (N=40)	Percentage (%)
Age
Between 60 and 70 years	5	12.5%
Between 70 and 80 years	29	68.5%
Over 80 years	6	19.0%
Marital status
Married	26	65.0%
Widowed	14	35.0%
Time elapsed since the operation
Between 1 and 6 months	27	67.5%
Between 6 and 12 months	13	32.5%

POSTOPERATIVE QUALITY OF LIFE

The average quality of life score for participants is 37.525, with a standard deviation of 1.879 (max=67 and min=23); 77.5% of patients scored between 20 and 40 (very low quality of life), 17.5% scored between 40 and 60 (average quality of life), and only 5% had a score between 60 and 80 (good quality of life) (Table 2).

Table 2.

Quality of life score, number (N), percentage (%), estimated gross average (M), and standard deviation (SD)

Quality of Life Score	Number (N=40)	Percentage (%)
Very low QOL: 20–40	31	77.5
Average QOL: 40–60	7	17.5
Good QOL: 60–80	2	5.0

Almost half of the men felt anxious when the pouch is full (47.5%) and 70% worried that it would loosen (items 1, 2, 3, 4, and 5; Table 3).

Table 3.

Results for items of the Stoma-QOL questionnaire, by percentage (%)

Item	Always (%)	Sometimes (%)	Rarely (%)	Never (%)
1. I become anxious when the pouch is full	47.5	20.0	20.0	12.5
2. I worry that the pouch will loosen	70.0	12.5	10.0	7.5
3. I feel the need to know where the nearest toilet is	50.0	20.0	22.5	7.5
4. I worry that the pouch may smell	42.5	32.5	15.0	10.0
5. I worry about noises from the stoma	15.0	20.0	37.5	27.5
6. I need to rest during the day	50.0	25.0	12.5	12.5
7. My stoma pouch limits the choice of clothes that I can wear	52.5	20.0	17.5	10.0
8. I feel tired during the day	47.5	17.5	20.0	20.0
9. My stoma makes me feel sexually unattractive	70.0	22.5	5.0	2.5
10. I sleep badly during the night.	57.5	30.0	10.0	2.5
11. I worry that the pouch rustles	67.5	10.0	12.5	10.0
12. I feel embarrassed about my body because of my stoma	60.0	17.5	12.5	10.0
13. It would be difficult for me to stay away from home overnight	47.5	17.5	20.0	15.0
14. It is difficult to hide the fact that I wear a pouch	40.0	22.5	17.5	20.0
15. I worry that my condition is a burden to people close to me	47.5	20.0	22.5	10.0
16. I avoid close physical contact with my friends	45.0	22.5	22.5	10.0
17. My stoma makes it difficult for me to be with other people	45.0	17.5	22.5	15.0
18. I am afraid of meeting new people	45.0	22.5	15.0	17.5
19. I feel lonely when I am with other people	60.0	17.5	12.5	10.0
20. I worry that my family feels awkward around me	60.0	17.5	12.5	10.0

Ostomy also has physical impacts (items 6, 7 and 8). Half of respondents felt tired during the day and said they needed to rest; 52.5% (n=21) also mentioned physical limitations (the stoma) that made it difficult to choose their clothes (Table 3). In addition, more than half suffered from sleep disorders (items 9 and 10). Because of their new health status, 47.4% of participants feared being a burden to their loved ones, 45% avoided contact with friends, and 45% felt uncomfortable around others because of their stoma. After surgery, 45% of participants reported that they were afraid to meet new people, 22.5% were afraid “sometimes,” 15% “rarely” and 17.5% “never.” Also, 60% of cystoprostatectomized patients felt lonely even when other people were present (Table 3).

SEXUAL ACTIVITY

In our sample of 40 men, only 26 agreed to complete the IIEF5 questionnaire on sexual life and function, for a response rate of 60%. All these respondents suffered from impotence: 88.46% of men had total impotence and 11.53% had severe impotence (Table 4).

Table 4.

Results of the IIEF5 questionnaire

	Number (N=26)	Percentage (%)
Total impotence	23	88.46
Severe impotence	3	11.53
Mild impotence	0	0
Normal sexual function	0	0

DISCUSSION

The results show a deterioration in the quality of life of men with bladder cancer who underwent total cystoprostatectomy with urinary diversion. Indeed, 77.5% of the patients in our sample had a “very low” quality of life (a score of between 20 and 40). Other studies conducted in different countries (Anaraki et al., 2008; Manderson, 2005; Mason et al., 2018) gave similar results. For example, Erber et al. (2012) conducted a quantitative descriptive study on 301 patients who had had TCP as a result of bladder cancer. They administered two questionnaires, the general Cancer Quality of Life Questionnaire (QLQ-30) and the specific Muscle Invasive Bladder Cancer Questionnaire (QLQ-BLM30), drafted by the European Organisation for Research and Treatment of Cancer (EORTC). Their results show deterioration in quality of life after surgery on all levels: functional, social, and psychological. The cross-sectional descriptive study conducted by Mason et al. (2018) in British Columbia, Canada, concurs, with 673 participants answering the following 3 questionnaires: (1) Functional Assessment of Cancer Therapy – Bladder (FACT-BI); (2) generic Health-Related Quality of Life Questionnaire (HRQOL EQ-5D-5L); and (3) Social Difficulties Inventory (SDI-21). The results show significant impacts on the quality of life of seniors, including depression and anxiety, social distress, obstacles to daily activities, sexual dissatisfaction and, for almost half of the participants, a decline in their body image. Ahmad Khan, Jamal, Rachid, and Ahmed (2011) found a significant decrease in the quality of life score between the preoperative period (score of 79.63) and the postoperative period (score of 55.79) (p=.005). No area is spared: social life, sexual activity, financial situation, body image, physical health, and religious well-being are all affected.

Yet, according to other recent studies, TCP would improve patients’ quality of life regardless of the type of surgery: cystectomy with Briker-type urinary diversion, orthotopic neovascular surgery or trimodal therapy (Al Hussein Al Awamlh et al., 2015; Ali et al., 2015; Huang et al., 2015).

In terms of sexual function, participants in this study showed impotence after surgery. The joint study conducted by Kowalkowski et al. (2014) produced very similar results. Indeed, these researchers used a quantitative design to examine the sexual function of 117 patients and a qualitative design for 26 other patients. Their results show that more than half of the respondents, or 55.3%, reported that cystoprostatectomy had disrupted their relationship with their spouse. In addition, 60% of men had difficulty having or maintaining an erection, and 43.1% had trouble ejaculating. According to qualitative data, 50% of those interviewed reported sexual dysfunction. Similarly, a study by Kandemir and Oskay (2017) and another by Gilbert, Ussher, and Perz (2010) showed that TCP seriously modifies patients’ sexual function.

In general, TCP deteriorates postoperative quality of life, which explains the emphasis placed by several authors on the importance of the nursing role in the management of cystoprostatectomized patients before and after surgery (Burton, Allison, Smart and Francis, 2011; Kleinpell, 2010).

IMPLICATIONS

Our results contribute to the advancement of knowledge on how cystoprostatectomy impacts patients’ quality of life and the steps to be taken to improve this latter. Indeed, by focussing on the aspects that are most affected by surgery as bladder cancer treatment, the study results could guide nursing intervention for people with bladder cancer (particularly those who have undergone cystoprostatectomy).

The results make it possible to consider recommendations for nursing practice, research, and education.

1. For nursing practice

• Provide an opportunity for patients to express themselves, their concerns, and interests.

• Involve patients in decision-making about their care plans.

• Educate and inform patients about hygiene measures to be taken when changing the ostomy system to reduce the risk of skin irritation and urinary tract infection.

• Educate and train patients prior to surgery on using the ostomy pouch.

• Provide preoperative counselling sessions to answer questions about body image, surgery and its complications, sexual dysfunction, and ostomy care.

• Improve collaboration with patients and offer a holistic approach.

• Organize preoperative meetings with an experienced ostomate and an ostomatologist.

• Involve a sexologist before and after surgery to help patients overcome sexual problems resulting from the procedure.

2. For research

It would be useful to identify the specific knowledge on the postoperative experience of this population and to carry out a phenomenological qualitative study. It would also be interesting, with a view to showing nurses’ privileged role in this transitional phase, to compare the postoperative quality of life of a group having received nursing before and after the TCP with that of another group that did not receive such preparation.

3. For education and continuous training

It is important to improve the clinical supervision of ostomy nurses by ensuring adequate learning and support, via ongoing clinical training, accessibility to experienced patients (via the Tunisian Ostomates Association), and professional development opportunities (conferences, interactive meetings with other experienced nurses, etc.). Finally, the most reliable teaching method for these patients should be chosen. For example, workshops on ostomy care that involve long-standing ostomates or the use of simulation-based learning methods could be offered as part of preparation for surgery.

CONCLUSION

The primary goal of this study was to describe the postoperative quality of life of men who have undergone total cystoprostatectomy as a result of bladder cancer. Its results showed that quality of life after TCP drops in all spheres of life, including body image, physical health, psychological, social and sexual health. Indeed, patients experience many changes in the pre- and postoperative stages that require adequate nursing intervention.

Finally, this study was also an opportunity to promote reflection about how to extend nurses’ clinical autonomy. It encourages the use of innovation in preoperative preparation, such as the creation of websites for patients and their family members.