1 Background

Indwelling urinary catheterization (IUC) urethral or suprapubic is commonly used to manage patients with incontinence and retention. Stricture is a known complication of transurethral catheterization (TUC), especially in men, if the catheter is in place for a long time. As regards to infection rates according to studies done there were no differences between the two methods of catheterization and there is less pain experienced by those with suprapubic catheterization [1, 2].

IUC is performed worldwide [3,4,5,6] and needy patients are discharged home with it [7,8,9]. According to studies done globally prolonged use of an IUC in addition to its huge financial burden also has several other complications that significantly contribute to patients’ poor quality of life (QoL) [10, 11]. These complications include catheter associated urinary tract infections (CAUTI), catheter blockages, leakage, bladder spasms and negative impact on the person’s sex life [9, 12, 13]. These problems have an impact on the well-being of the patients and their carers and thus their quality of life [4, 14,15,16]. Chronic diseases contribute a large share of disease burden in low- and middle-income countries compared to high income countries due to the differences in the socioeconomic status resulting in poor QoL [17].

In Tanzania according to the study done by Ndomba et al. the prevalence of patients living with an IUC at home was 9.6% [18].This prevalence might increase in Tanzania since the number of older people aged 60 years and above who are subject to using IUC might increase to over 7.7% in 2050 [19]. Knowledge on prevalence for patients living with long-term IUC is now established yet their QoL is not known in North-western Tanzania. Understanding their quality of life is crucial since it is a human right. As documented in a study done in UK living with an IUC or with someone who has one creates a strain in terms of managing the physical, psychological and social consequences [16].

QoL studies relating to patients’ experiences on living with a long-term IUC is a global problem; with very few studies done from the US between 2002 and 2015 whereas from UK in 2013 [4, 20, 21] also as evidenced by a study done by Alex et al. only 15 studies from USA, Australia, UK and Turkey were published between 2003 and 2019 that focused on the needs of patients living with indwelling urinary catheters and their quality of life [9] There is no study from the Sub-Saharan Africa including Tanzania which has investigated on the QoL of patients living with long-term IUC living at home. Absence of this information prompted us to carry out this study. In our study QoL means individual’s holistic perception of well-being in meeting goals, expectations, and standards according to culture and value system. Therefore, this study aimed at determining the QoL of participants with long-term IUC living at home in Northwestern Tanzania. To the best of our knowledge this is the first study to be done in Sub-Saharan Africa particularly in Northwestern Tanzania that has shed light on the QoL of participants living with long-term IUC at home.

2 Methods

2.1 Study design and setting

This was a hospital based cross-sectional study conducted from December 2016 to September 2017 in the Northwestern Tanzania. Tanzania has a total population of over 56 million people. Approximately, one-third of the Tanzanians live in urban and the rest of the population live in the rural areas and work in agricultural sector [22]. The study site was urology clinic at Bugando Medical Center (BMC) which is a consultant, tertiary and a teaching hospital located in the Northwestern Lake Zone of Tanzania. BMC has a bed capacity of 1000 with 9 out-patient clinics including the urology clinic where this study was conducted. This hospital serves 9 regions namely Mwanza, Simiyu, Mara, Kagera, Shinyanga, Geita, Tabora, and Kigoma regions with an estimated population of 13 million people among them 27.7% are 60 years and above.

2.2 Participants and eligibility criteria

The study population included adult out-patients 18 years and above with long-term IUC who voluntarily consented to participate in the study. For out-patients who had a catheter in situ less than 14 days were excluded. A sample size was estimated by Kish Lisle formula [23]. Since no study on QoL has been done in the Sub-Saharan Africa including Tanzania to determine the QoL of patients with IUC; the estimated percentage used was assumed to be much lower (15%) than that of Brazil (32.3% QoL for the elderly [24]) as patients were coming from a low resource country resulting in a minimum sample size of 196 patients living with long-term IUC.

The study population at the clinic included 2112 patients who attended urology clinic with different conditions between December 2016 and September 2017. From this population, 202 patients living at home with a long-term IUC (more than 14 days) were conveniently recruited non-repetitively for a period of 9 months prospectively. WHOQOL‑BREF tool was used to determine their quality of life [25] and has the highest proportion of items that are individualized [26, 27]. The tool has been used to measure QoL from individuals with other conditions apart from the condition of participants in this study [28]. This is a cross-culturally valid instrument for comprehensively assessing overall subjective wellbeing and been used in other studies of older people in Africa [29]. In addition the tool used has been used in our setting (Tanzania) by Mwanyangala et al. [29].

The tool was thus adapted to meet the needs of our research study enhanced by our conceptual developed model which also consisted of elements of individual characteristics, physical (biological), psychosocial and environmental aspects which had some similarities to the domains contained in the WHOQoL BREF tool which was used in collecting data in this study in a more simpler way of understanding. The tool was translated into Swahili as most participants were Kiswahili speakers. In testing for reliability and validity; the tool was checked by 20 local experts with different backgrounds (doctors, nurses and lecturers) and few patients with IUC. The model helped in asking the questions during the interview to be more focused when filling in the WHOQoL Bref questionnaires.

2.3 Data collection

We collected data based on the key aspects- individual characteristics, biological functioning & symptoms, environmental characteristics & functional status as narrated below:

2.4 Individual characteristics

We collected data on sociodemographic and clinical characteristics of out-patients with long-term indwelling urinary catheters living at home who were enrolled in the study such as age, gender, marital status, religion, residence, occupation, indications for catheterization, ability to work, sleep patterns, education, duration of catheter in-situ (weeks) and comorbidity which could have an influence on the QoL for a person living with a long-term IUC using WHOQoL BREF tool.

2.5 Physical domain (biological functioning and symptoms)

We collected data on biological functioning and symptoms as depicted in our conceptual model by using WHOQoL BREF tool. Information from participants was sought whether they experienced any problems/complications after catheter insertion and living with it. Information gathered included presence of pain, bleeding, and dislodgement of the catheter, leakage, blockage, signs of infections and the presence of other comorbidities which could hinder the person from performing the activities of daily living comfortably and thus affecting their QoL.

2.6 Environmental, psychological and social relationship domains (environmental characteristics and functional status)

We collected information as depicted in our model using the WHOQoL BREF tool regarding environmental characteristics which consists of internal and external environments [30]. Regarding the internal environment participants were asked questions regarding their concerns, experiences and values in living with long-term IUC which had a bearing on the functional status of the participant in carrying out the activities of daily living and thus affecting their QoL For the external environment the participants were asked questions relating to the support systems available in the environment i.e. the social support system including the family, neighbors, health care facilities, community factors such safety in the environment, recreational activities, and transport.

The data collection process started by identification of the clinic days and hours where recruited participants attended. There was a special room set aside at the clinic for privacy when conducting interviews for the recruited participants. Research assistants were involved in sorting participants with long term IUC who met the inclusion criteria and were at clinic cue waiting to be seen by their respective doctors. The recruited participants were then directed to go to the interviewing room where the WHOQoL BREF questionnaires were filled.

Majority of questionnaires were interviewer administered. These respondents included patients who had no formal education and some who had difficulties in understanding the questions due to language barrier. The principal investigator sought help from the escorting person to help in explaining and clarifying question(s) thereafter, the principal investigator filled in the questionnaires. To avoid bias when using the escorting person to ask the participant about certain questions which were difficulty for him to understand due to language barrier, the principal investigator tested the escort whether he himself also understood the question asked. Once confirmed then the principal investigator again emphasized to the escort the importance of asking the participant exactly as the question intended to elicit the right information required.

2.7 Ethical consideration and consent to participate

We obtained approval for the study from the Joint Catholic University of Health and Allied Health Sciences (CUHAS)/ Bugando Medical Centre (BMC) Research Ethics and Review Committee (CREC) with ethical clearance number CREC/152/2016. Written informed consents were obtained from every study participant after full disclosure using information sheet. All participants were asked to sign informed consent prior enrolment.

2.8 Data analysis

Data obtained were analyzed using STATA (Statistical software package for statistics and data) version 13 (college station, Texas). Descriptive statistics were used to compute means and standard deviations for numerical variables as well as frequencies for nominal and ordinal variables. Significance of association between various variables and QoL were tested using t test with equal variances. Inferential statistics applied included an independent sample’s t‑test for comparing numerical socio-demographic variables. A P-value < 0.05 was considered statistically significant. The mean score indicating good QoL according to our study is a mean score of 50 and above. The higher the score the higher the QoL [30].

3 Results

The age of 202 participants ranged from 18 to 95 years with the median age of 69 (IQR 61–77) years. The majority 194 (96%) were males; above 65 years were 123 (60.9%) and most of the participants were married 187 (92.6%). There were 159 (78.7%) with the highest level of primary education and slightly more than two-thirds 136 (67.3%) were subsistence farmers. With regard to religion, the majority of the participants 153 (75.7%) were Christians and 117 (57.9%) were living outside Mwanza. More than a half of participants 111 (54.9%) had their catheters for ≥ 6 weeks and 123 (60.9%) had their catheters changed at least once during the study. The urethral type was the commonest 120 (59.4%). The most common indications were benign prostate hypertrophy (BPH) 129 (63.9%) and urethral stricture 34 (16.8%) (Table 1).

Table 1 Socio-demographic and clinical characteristics of out-patients with long-term indwelling urinary catheters living at home enrolled in the study
Full size table

The QoL of participants with long-term IUC was poor in all the domains. The mean score of quality of life was below average in all domains for patients with long-term IUC. The most affected domain was the environmental domain with a mean score 26.05 ± 0.63 (Table 2).

Table 2 Summary of overall QoL by Domain
Full size table

Mean score for different domains are displayed by participants’ socio-demographic characteristics such as age, sex, education level, marital status, and clinical characteristics such as duration of catheter in situ, type of catheter and catheter change. No difference in quality of life was observed for age and sex. However, participants who reported being married 51.1 ± 1.6 were slightly better in social relationship than the singles 31.1 ± 5.4; P-value < 0.001. Having at least primary education was found to have slightly better QoL in environmental domain 26.1 ± 0.7 than those who had no formal education 23.5 ± 1.5; P-value 0.0390. There was no difference in domains with regard to type of catheter and catheter change (Table 3).

Table 3 Comparison of WHO QOL-BREF domain score with socio-demographic factors and duration of catheter in-situ
Full size table

4 Discussion

QoL in all the four domains of WHOQoL BREF: physical health, psychological, social relationship and environmental was observed to be poor among participants living with a long-term indwelling urinary catheter (IUC) at home in Northwestern Tanzania. These findings are similar to a study done in rural setting of Kerala India among the elderly population where the mean score of QoL was below average in all domains and the psychosocial domain being badly affected [31]. This phenomenon has not been studied before in this part of the country and Tanzania as a whole as well as in Sub- Saharan Africa as evidenced by Alex et al.; only 15 studies from USA, Australia, UK and Turkey were published between 2003 and 2019 that focused on the needs of patients living with indwelling urinary catheters and their quality of life [9]. The findings in our study could be attributed by the following factors: age above 60 years in the majority of participants, primary education (low level), not likely to be employed in high paying jobs, had a catheter in-situ for a long time not knowing when they could be freed from it, were subsistence farmers with meager earnings from the hand-hoe farming to make their ends meet. With such an age and coming from Low–middle income country (LMIC) we also observed in this study that about 28.7% of the participants had comorbidity such as hypertension, diabetes, cancers and HIV & AIDS. Studies have documented that the QoL of individuals from LMICs is affected by the presence of non-communicable diseases which are not readily treated due to poor socio-economic status leading to poor QoL [17, 29, 31, 32]. Furthermore, according to the recent study done by Ndomba et.al [33] on urinary tract infections and associated factors among patients with IUC the clinical findings revealed that the overall prevalence of laboratory-confirmed CA-UTI among patients with IUC was 56.8%. Patients with long-term IUC had a significantly higher prevalence of CA-UTI than patients with short-term IUC (82.2% vs. 35.3% p < 0.001) respectively. For out-patients other complications they experienced were leakage and CA-UTI 11.9%, Blockage and CA-UTI 10.4%, bleeding and CA-UTI 5.4% and leakage of urine 1.5% These findings are similar to those noted by Alex et al. and Ikuerowo et al. [9, 10] that adverse events experienced by patients with long-term catheters were recurrent urinary tract infections, catheter blockages, and urine leakage All these factors could have a huge impact contributing to poor QoL in all the sub-domains to be below standard. Another study done in Tanzania by Ndomba et al. [18] on prevalence and indications of long‑term IUC among out‑patients most of the patients had delayed treatment of the underlying conditions due to lack of health insurance coverage resulting in living with long-term IUC and thus affecting their QoL. In comparing with another study that was done in Tanzania by Mwanyangala et al. [29] on health status and quality of life among older adults in rural Tanzania who had similar socio-demographic characteristics like our study participants with an exception that they did not have an IUC; their findings were the mean and median quality of life scores (WHOQoL) were 68.2 and 68.8 vs 26.1 and 49.6, respectively. So living with an indwelling urinary catheter causes strain on the part of the individual both physically, socially, psychologically and environmentally. As documented by Mackay et al. [16] living with an indwelling urethral catheter or with someone who has one also creates a strain in terms of managing the physical, psychological and social consequences. It is unfortunate, that these participants have been forgotten in determining their quality of life and come up with possible strategies to improve their well-being. According to Mackay et.al. [16] they documented that “The population of urinary catheter users is often forgotten by wider society because the issues they experience on a regular and recurrent basis are not visible, are not directly life-threatening, and are not discussed”. Lack of information on the QoL of this vulnerable group is imperative to understand their QoL.

Despite the low mean scores in all the four domains, this study has also revealed some interesting and important findings in the socio-demographic characteristics namely level of education and marital status (married) as factors associated with poor QoL. The primary level of education in this study demonstrated a slightly good QoL in the environmental domain. This could be attributed to the inner environment which entails experiences, concerns, values. For an older person the inner environment is very important in determining the individual’s QoL especially for an elderly person living with long-term IUC. Also the external environment for a person living with a long-term IUC is important if it is well managed to prevent infection. Having a certain level of education however low (primary education) makes a difference to an individual’s QoL who is living with a long-term IUC. This study therefore, has shed light that if these participants had adequate information (education) on managing their catheters at home there would have been a big difference in their QoL. Unfortunately, this is the first study to be done in Tanzania and in the Sub-Saharan Africa on QoL for patients living with a long-term IUC at home and thus lacks comparison with studies of a similar nature from this region. According to the study done in UK by Mackay et al. [16] documented that educational support is required for patients to be involved in the management of their own catheter care to improve their quality of life and those around them.

Likewise, the attribute of being married in this study has been associated slightly with better QoL in socio-relationship domain than the singles. This has also been documented in other studies that those married had better QoL [29, 31] The majority of the participants in this study were men who were married. By their nature women tend to be more concerned, caring and supportive to their spouses when they fall sick and more so when a man has an IUC. Therefore, investing more on these women in terms of equipping them with adequate information on how to support their husbands with long-term IUC will enhance their QoL at a desirable level as documented by Mackay et al. [16]. This is another noble finding in our study. Moreover, the existing social network within their neighborhood is a Tanzanian social value which is deep-rooted in most societies also plays a role in influencing the QoL in this domain for these participants.

Many studies have been done on IUC worldwide [34,35,36,37,38,39,40] and also on QoL for older persons to cite few [24, 27,28,29, 31, 41]. However, very few studies on QoL for older patients living with long-term IUC have been done globally and none in the Sub-Saharan Africa [9, 24]. To the best of our knowledge this is the first study that has established the QoL of older patients living with long-term IUC in Tanzania especially in the Northwestern part of Tanzania and in Sub-Saharan Africa.

5 Study limitations

The number of women participants living with a long-term IUC enrolled in the study were very few-eight. In the community this is a rare occasion to find women living with a long-term IUC because before they are discharged home the majority are sent to the Comprehensive Community Based Rehabilitation in Tanzania (CCBRT) which works to prevent disability. Therefore, a big picture of the results is missing. Despite the small percentage of women participants in this study however, they have shed light on their quality of life in living with a long-term IUC in the four domains of the WHOQoL BREF tool.

The study design was cross-sectional one point observation. This might either have affected the results to be too low depending on the mood in which the patients were during that day of the interview. A longitudinal study probably might have given the same results or different. In future, a longitudinal study design is needed to further investigate and clarify the relationship among the domains.

6 Conclusion

QoL of participants with a long-term IUC in Northwestern Tanzania is generally poor in all domains. Those with primary education & above and the married were slightly better in environmental and social domains respectively. We recommend on the needs of improved social economic status and the importance of close follow up at home for the married participants living with long-term IUC; also equipping the married participants (with their spouses) with adequate information (education) on how to manage the catheters at home. This would greatly improve their QOL in all the domains especially in the environmental and psychological domains.