Patients living 25 years or longer with a urostomy; What can we learn from them?

Cobussen-Boekhorst1, Janssen1, Smits-van de Camp1, Aarts2, Verberk2, Martens F1, Feitz1, Heesakkers J1

Research Type


Abstract Category

Quality of Life / Patient and Caregiver Experiences

Abstract 105
E-Poster 1
Scientific Open Discussion ePoster Session 7
Wednesday 4th September 2019
13:15 - 13:20 (ePoster Station 4)
Exhibition Hall
Nursing Quality of Life (QoL) Incontinence Surgery
1.Department of Urology, Radboudumc Nijmegen, the Netherlands, 2.Hoge School Arnhem en Nijmegen, Nijmegen, The Netherlands

H Cobussen-Boekhorst




Hypothesis / aims of study
Limited information is available in the literature about living ≥ 25 years with a urostomy. At that time stoma care nursing wasn’t standard. Over the years this became more common and nowadays patients see stoma nurses in the pre-and postoperative phase and in follow-up, depending on patient’s needs. 
This study was performed because we were interested in  the Quality of Life (QoL) of patients living ≥ 25 years with a urostomy. Which experiences, both beneficial and limiting aspects, they cope with and how these aspects influence their QoL.  
The aim of this study was to find out how we could further develop the current care program for these patients.
Study design, materials and methods
From a self-maintained list in which patients with a urinary diversion ≥ 25 yrs were collected, we selected the patients who were using stoma appliances, due to Bricker ileal conduit (n=19) or a ureterocutaneostomy (n=2). 
A mixed-methods study (quantitative and qualitative) was used. This method makes it possible to investigate  most patients through the quantitative study and to further extend these results through the qualitative study. This kind of study is appropriate for a relatively small research population.
To collect data regarding the quantitative study a validated questionnaire[1], available in our language and also validated for urostomies[2] was used, Supplemented with questions concerning gender, age and time living with the urostomy. The QoL-score was determined by the cumulative score of the questionnaire. Higher scores indicate higher QoL[1,2,3]. However, no further explanation is given about the spread, to score a poor, moderate or good QoL. Therefore we used the classification described by Gomez, et al (2014)[3].   Beside that we put the questions into four categories (stoma material related, fatigue, self-image and social life) to compare them with the outcome of the quantitative results.   
Subsequently semi-structured interviews with an narrative impact were conducted to collect information about the beneficial and limiting aspects. The study population consisted of a heterogeneous group of patients, which was generated through constant comparison. By constant comparison, saturation is achieved fastest, despite the relatively small population. 
Patients were invited by a letter. In order to participate in an interview they were obligated to fill in their name and telephone number. 
The study received ethical approval of our Committee on Research Involving Human Subjects, registration number 2018-4971. Informed written consent was obtained from the patients. 
Quantitative data were evaluated using computer SPSS software. Regarding the qualitative data, all interviews were recorded and anonymously transcribed, segmented, coded and then analysed by two researchers. A logbook and research memos were kept.
The questionnaire response was 71% (n=15). One questionnaire was invalid, because of 2 missing  answers.  Ratio female/ male was equal.  Mean age was 62 (42-83; SD:13) yrs. Mean time living with a urostomy was 40 (25-56; SD:11) yrs.    
The most common indications for a urostomy were bladder exstrophy (n=6), urinary incontinence (n=4),  spina bifida (n=2) and others (n=2). (see table 1) Although the results per question vary (see figure 2), a mean score of 63 (n=14) for QoL was experienced.  Eleven patients had a good QoL (mean 66) and no one had a poor QoL. There were no significant differences between female/male and for the age groups.  
Nine patients gave permission for an interview, after five patients full saturation was achieved and more interviews were therefore not needed. Characteristics regarding gender, age and time living with a urostomy were comparable with the quantitative group .   (see table 1) 
Patients generally experience few to no limitations of their urostomy in daily activities, as it has become part of them. They are always wary of the nearest toilet. This however has become an automatism. Some patients stated that it is difficult to change their appliances, in public restrooms, when having leakages.  Therefore patients sometimes worry about release of the pouch. Some patients feel hampered by their choice of clothing. 
Complications of the urostomy and/or the underlying disease or condition compose the limiting aspects. These problems manifest in additional hospital admissions, poor sleep or other inconveniences. Because of these problems, patients experience limitations in energy level.
In the first years of living with a urostomy maintaining social contacts and sexuality were experienced limitations. Especially concerning their sexuality, patients feel unattractive due to their urostomy. One patient stated that the adolescent phase was difficult. Sexuality should be discussed more often in follow-up. However patients stated that these limitations diminish over the years. Other themes that came out strongly was that partners or caregivers should be involved in the process. Also the help of fellow sufferers was advised. 
In the early years of the urostomy, the information was moderate or non-existing for patients undergoing a urostomy procedure.
The guidance patients receive nowadays is generally experienced as very good. Not all patients have structural stoma care nursing guidance, but are aware of who to contact if assistance is needed.
Interpretation of results
The results of the quantitative and qualitative study strengthened each other and are consistent with the (limited) results described in current literature. Due to the fact that a urostomy is not listed separately as a medical diagnosis, patients could have been missed. The study group was small, which limits the probative force.   
Prospective follow-up e.g. every 5 years regarding QoL with validated questionnaires might give more insight in the experienced QoL over the years.  
The questionnaire indicates that the lowest score is 20 and the highest 80. However, no further explanation is given about the spread. Therefore the classification described by Gomez, et al (2014)[3]  was used (70-100% good, 30-69% moderate, 0-29% poor QoL).  Another limitation of the questionnaire is that the score of an incomplete questionnaire cannot be calculated.  It can be advised to repeat the validation of this questionnaire.
Concluding message
The QoL of patients living ≥ 25 years with a urostomy is generally experienced as good. QoL is not so much influenced by the urostomy itself, but by the underlying disease and/or complications of the urostomy. During the first years information and guidance is important for the experienced QoL. Healthcare providers have to give honest information, without focusing on barriers. However, living with a urostomy should not be underestimated from a medical point of view. The guidance patients receive nowadays is generally experienced as very good in our group, however the results indicates that it remains important to discuss sexuality and involve partners or caregivers and also the help of fellow sufferers. 
Multi-centered studies and prospective follow-up regarding QoL with validated questionnaires might give more insight in the experienced QoL over the years.
Figure 1
Figure 2
  1. Canova, C., Giorato, E., Roveron, G., Turrini, P. & Zanotti, R. (2013). Validation of a stoma-specific quality of life questionnaire in a sample of patients with colostomy of ileostomy. Colorectal Disease, Volume 15, Issue 11, 692-698.
  2. Congres Coloplast ‘Onderweg naar morgen!’. (17 mei 2011). Validatie van Stoma-Kwaliteit van Leven vragenlijst.
  3. Gomez, A., Barbera, S., Lombraña, M., Izquierdo, L., & Baños, C. (2014) Health-Related Quality of Life in Patients With Urostomies. Journal of Wound, Ostomy & Continence Nursing, Volume 41, Issue 3, 254-256.
Funding none Clinical Trial No Subjects Human Ethics Committee CMO Radboud University Nijmegen MC, the Netherlands Helsinki Yes Informed Consent Yes