Long-term compliance with bladder management in patients with spinal cord injury: A Saudi-Arabian perspective

Abstract

Objective: To examine long-term compliance with bladder management in patients with spinal cord injury (SCI) at a tertiary care rehabilitation facility in Saudi Arabia.

Design: Cross-sectional survey.

Setting: Tertiary care rehabilitation facility in Saudi Arabia.

Participants: A self-administered questionnaire was distributed to patients with SCI during their clinic visits. 50 patients (41 males and nine females) participated in the survey. Data documentation included demographic characteristics, type and level of injury, compliance with bladder management and barriers in compliance.

Main outcome measures: The type of bladder management employed at first follow-up visit was compared with that employed at discharge.

Results: Eleven out of 41 patients who were discharged on clean intermittent catheterization (CIC) stopped it within 3 months of discharge, mainly due to lack of accessibility and financial support to buy catheters. Of the total sample, 23% reported that they did not know the difference between catheter types and their advantages, and 49% stated that they did not receive proper health education regarding bladder management.

Conclusion: CIC was the most commonly used bladder management technique in patients with SCI following up at a tertiary care rehabilitation facility in Saudi Arabia. Compliance with CIC may be improved by ensuring access to catheters post-discharge and by providing appropriate education about bladder management during inpatient rehabilitation.

Introduction

Spinal cord injury (SCI) is one of the most serious medical issues in Saudi Arabia, as it has one of the highest rates of traumatic SCI in the world.¹ The most common cause of SCI in Saudi Arabia is road traffic accidents.² Many patients with SCI have to live with their disabilities and encounter problems throughout their lives.³ SCI can have devastating effects on the human body. One of the most common complications of SCI is neurogenic bladder, a term encompassing a number of urinary conditions caused by neurologic damage.⁴ Regaining bladder function is among the top priorities of individuals with SCI.⁵ Significant morbidity including medical complications and social problems occur as a result of inadequate bladder management in patients with SCI.

Despite decreases in the mortality associated with urologic complications in recent decades, urinary tract problems remain an important cause of morbidity in patients with SCI. Impaired bladder function incurs a risk of urologic complications such as urinary tract infections (UTI), nephrolithiasis, incontinence, and impaired renal function.⁶ Urinary incontinence may result in poor perineal hygiene, development of pressure ulcers and is associated with psychosocial stress.

The goals of bladder management in patients with SCI are to achieve adequate bladder drainage, low-pressure urine storage, and low-pressure voiding.⁷ It is important to consider patient preferences and the potential for long-term compliance while devising a bladder management plan.

Clean intermittent catheterization (CIC) is the standard procedure for managing the neurogenic bladder in patients with SCI.⁸ It decreases the risk of UTI and renal damage.⁹ Other modalities include in-dwelling Foley catheterization (IFC) and suprapubic catheterization (SPC), condom catheter for men, timed voiding, Creeds maneuver, urinary diversion procedures, bladder augmentation cystoplasty, and pharmacological treatment.¹⁰ Factors which influence the selection of a bladder management program include cost, comfort, availability of catheters and potential complications.¹¹ Patient’s physical and psychosocial attributes play a considerable role in devising appropriate bladder management program.

In this study, we examined long-term compliance with bladder management and the associated barriers in elderly patients with SCI who have completed an inpatient rehabilitation program.

There is very limited literature on bladder management on SCI in KSA or in the neighboring countries. Two quality of life surveys were carried out at follow up visits for individuals with SCI who were rehabilitated between 1982 and 2003 in Riyadh region which included 57 males and 50 females.^12,13 Most of the male patients were using condom catheter whereas nearly one-fourth of the patients were on CIC at the time of survey.¹² The female survey showed that 64% were using CIC and 22% used IFC.¹³ These surveys did not analyze the bladder management at the time of discharge; which was carried out in our study. There are no similar studies in the neighboring countries of Arabian Peninsula.

Methods

A cross-sectional survey was carried out among patients attending the SCI clinic of the rehabilitation hospital, King Fahad Medical City (KFMC), Riyadh, Saudi Arabia between August 2015 and August 2016. Data were collected using a pre-piloted questionnaire developed by the investigators after extensive literature research and considering the socio-cultural norms in the region. We pre-tested the questionnaire with five patients followed by revision of the questionnaire. Further, we invited three local experts involved in SCI rehabilitation to assess comprehensiveness and sensitivity of the items in the questionnaire. It was not formally validated statistically. Study was approved by the Institutional Review Board. Final survey was offered to 60 patients in the follow-up clinics, out of which 50 patients enrolled in the survey. Participation was voluntary and all patients signed informed consent documents for participation in the study. Rehabilitation Hospital at KFMC is the largest ministry of health rehabilitation hospital in Saudi Arabia which offers comprehensive SCI rehabilitation services across the country. Surveys were carried out at first follow up visit which is usually three months after discharge from inpatient rehabilitation at our facility. Male and female patients of age 18 years and above with traumatic SCI were included in this study. Patients with concomitant acquired brain injury and incontinence prior to SCI were excluded. Only those patients were included who were incontinent to bladder at discharge and follow-up. The questionnaire in cross-sectional survey examined demographic characteristics, compliance with bladder management, and barriers to compliance. Categorical variables, such as sex, type of injury, and level of injury, were presented as numbers and percentages, whereas the continuous variable age was expressed as the mean ± standard deviation (SD).

The Chi-square test and Fisher’s exact test was used to determine the significant relationship among categorical variables. A cross-table association was carried out between type of injury and other factors including sex, level of injury, catheter at discharge or follow up. Chi-square test was used to test the association in 3 × 2 cross table and Fisher’s exact test used for 2 × 2 cross table. Proportional t-test was not used. P value greater than 0.05 and less than 0.1 was considered as weak significance. P value less than 0.05 (P < 0.05) was considered significant and P-value less than 0.001 was considered highly significant. All data were analyzed using the statistical software package SPSS 22 (IBM Corp., Armonk, NY, USA).

Results

Fifty patients with SCI were surveyed, comprising 41 males and nine females. The mean age of the patients was 29.95 years (SD = 10.228 years). According to the American Spinal Injury Association (ASIA) classification, 33 patients (66%) had complete SCI (ASIA-A) and 17 patients (34%) had incomplete SCI (ASIA B, C, or D) (Table 1). The main neurological level of injury of our sample was thoracic. Out of the total 50 patients, 41 patients were discharged on CIC, six on IFC and three on SPC. Out of the 41 patients discharged on CIC, there were nine females and 32 males. All nine females in the survey were discharged on CIC.

Table 1. Demographic and clinical characteristics of the patients.

Characteristics	Description	n (%)
Sex	Male	41 (82.0%)
	Female	9 (18.0%)
Type of Injury	Complete	33 (66.0%)
	Incomplete	17 (34.0%)
Level of injury	Cervical	19 (38.0%)
	Thoracic	27 (54.0%)
	Lumbar	4 (8.0%)
Type of catheter at discharge	IFC	6 (12.0%)
	SPC	3 (6.0%)
	CIC	41 (82.0%)
	without catheter	0 (0.0%)
Type of catheter at follow up	IFC	12 (24.0%)
	SPC	3 (6.0%)
	CIC	30 (60.0%)
	without catheter	5 (10.0%)

IFC, Indwelling Foley catheter; SPC, suprapubic catheterization; CIC, clean intermittent catheterization.

Most of the patients with thoracic injury were discharged on CIC. At follow-up, 11 (26.8%) of those discharged on CIC had stopped using CIC within the first 3 months of discharge, and changed to IFC or diapers. Four out of those 11 patients were females who discontinued CIC and switched to IFC or diapers. No patients switched from CIC to SPC. All patients who stopped using CIC could not continue on CIC as they reported difficulty in finding the correct catheters in their region. Additionally, eight patients reported that catheters were expensive and that they lacked financial support to obtain it. Seven patients who were discharged on self CIC stated that they found it difficult to continue CIC after discharge because of poor hand function and preferred to stop it. For the 41 patients discharged on CIC, 39% of them reported that they needed the help of a caregiver or family member to perform CIC. Only 17% of the patients discharged on CIC reported no difficulties in finding the catheters in stores; however, 66% of them said that they had experienced difficulties finding catheters of the correct size. Furthermore, 39% of these patients stated that they needed to travel out of their region to buy the catheters. Of all the patients with SCI who were discharged on CIC, 85% stated that they considered the catheters too expensive, and the remaining 15% reported that they got their catheters free from governmental and social agencies.

Of the total sample, 23% reported that they did not know the difference between the types of catheter or their advantages and disadvantages. 29% of the patients discharged on IFC stated that they were not aware of when they should change their catheter. 10% of all patients reported that they were not aware that appropriate catheterization prevents renal damage. Also, 20% of the patients reported difficulty finding a medical center to change their catheter. Of the total sample, 49% said that they did not receive proper health education regarding bladder management. Those who reported receiving adequate education on bladder management received it from the physiatrists (48%), nurses (23%) and health educators (29%). Type of bladder management did not demonstrate any significant relationship with bladder management at discharge or follow up. Patients without catheters at follow up were incontinent, but specific bladder pattern was not identified in the study. Table 2 shows that there was a significant association between type of injury and level of injury (P-value = 0.008). Also, there was a weak significance between the type of injury and type of catheter at follow up (P-value 0.065). There was no significant association between type of injury, sex and type of catheter at discharge.

Table 2. Impact and association of injury type and study parameters.

		Type of injury		P value	Change from CIC to other management at follow up		P value
		Complete (n = 33)	Incomplete (n = 17)		IFC (n = 6)	Diapers (n = 5)
Sex	Male	26 (63.41%)	15 (36.58%)	0.410	3 (42.9%)	4 (57.1%)	0.348
	Female	7 (77.7%)	2 (22.2%)		3 (75.0%)	1 (25.0%)
Level of injury	Cervical	8 (42.1%)	11 (57.9%)	0.008	2 (33.3%)	4 (66.7%)	0.273
	Thoracic	23 (85.1%)	4 (14.8%)		3 (75.0%)	1 (25.0%)
	Lumbar	2 (50%)	2 (50%)		1 (100%)	0
Type of catheter at discharge	IFC	4 (66.6%)	2 (33.3%)	0.467
	SPC	1 (33.3%)	2 (66.6%)
	CIC	28 (68.3%)	13 (31.7%)
Type of catheter at follow up	IFC	9 (75%)	3 (25%)	0.063
	SPC	1 (33.3%)	2 (66.6%)
	CIC	22 (73.3%)	8 (26.66%)
	without catheter	1 (20%)	4 (80%)

IFC, Indwelling Foley catheter; SPC, suprapubic catheterization; CIC, clean intermittent catheterization.

Discussion

Most of our patients were discharged from the rehabilitation hospital using CIC as the method of bladder management. This is similar to previous data where CIC is the preferred option amongst patients with SCI.¹² In our study, the percentage of patients on CIC decreased from around 83% at discharge to 60% at follow up, while patients on IFC doubled at follow up. Poor compliance with bladder management was found in almost 27% of our study group. Even though, CIC is the standard and safest bladder management technique in patients with SCI for urinary incontinence, compliance to CIC remains a significant challenge in the community.^14–17

Poor compliance with CIC was also reported by Yavuzer et al., who found that more than half of patients (52%) discharged on CIC had switched to IFC.⁸ However, the rate of compliance with CIC observed in this study differed from that reported by other authors. Gallien et al., Maynard and Glass, and Hill et al. reported rates of changing from CIC to IFC of 6, 6, and 15%, respectively.^15,18,19 Maynard and Diokno reported compliance with CIC in 86% of their patients.²⁰ Conversely, Bakke et al. observed aversion to CIC in one-third of their patients, whereas Timoney and Shaw noted that only 50% of their female patients continued on the CIC program.^21,22 Seven of our patients discharged on CIC stopped using it due to poor hand function. Inadequate UE function is a significant barrier in continuation of CIC and has a prominent role in CIC ‘dropout’. Zlatve DV reported that out of 4481 patients of SCI evaluated for bladder management techniques, nearly 23.3% lack the upper extremity function to self-catheterize.²³ Close follow-ups to reevaluate upper extremity function and regular review of CIC techniques may help to lower down the noncompliance to CIC on long term. One of the other identified anatomical barriers was body mass index. Women were significantly affected as compared to men, once their BMI exceeded 25 kg/m².²³ Weight management programs and health education should emphasize body habitus as one of the important considerations in bladder management, especially in females, due to complexity of technique for CIC.

In our study, change of CIC to other bladder management technique at follow up was not significantly associated with either sex or level of injury (Table 2); however, some studies have suggested that the incidence of poor compliance with CIC is higher among female patients, and that females find the procedure more distressing and uncomfortable than men.^8,24 The main reasons given for poor compliance in these studies were the persistence of urinary incontinence despite anticholinergic therapy and the lack of availability of external collective devices for female patients.^8,22 In our study, four out of nine female patients who were discharged on CIC switched to either IFC or diapers. Among the female patients with poor compliance, 60% had quadriplegia and stated that they could not perform catheterization independently. The remaining 40% with paraplegia reported difficulties in obtaining catheters (either because of their cost or availability) as the main reason for their poor compliance.

The poor compliance with CIC demonstrated by our patients with SCI raises the questions of whether the long-term options were medically inappropriate, or the patients were inadequately educated during inpatient rehabilitation. Our study suggests a weak significant association between type of injury and type of catheter usage at follow up; however, any definite conclusions cannot be derived based upon this information regarding the appropriate selection of bladder management. Our study also brings attention to other factors which may have contributed to poor compliance. We identified that the availability and affordability of catheters were the major reasons of poor compliance with the long-term management of neurogenic bladder in this study. In Saudi Arabia, patients do not have to pay for the management of most health conditions, but only 21.95% of our patients using CIC reported receiving their catheters for free. The remainder purchased catheters themselves or catheters were bought for them by their legal guardian. In addition, 39% of the patients stated that they needed to travel out of their hometown to buy catheters or to find catheters of the correct size. Considering that ministry of health has considerable funding for devices and consumables, these findings suggest lack of provision of health care resources to end users. It may be attributed to deficient community-based rehabilitation services in the country. The role of primary care physician is also considerably poor in the continuity of care in the region. Most patients will await their follow up appointments with their rehabilitation physicians for medication refill or other prescriptions and do not usually approach their local physicians. The management of neurogenic bladder is also not a common practice in primary care facilities and patients usually get referred to specialized facilities for which they usually have to wait for considerable duration.

The results of this study reflect the need of emphases on health education among patients with SCI as nearly half of the patients reported lack of education regarding bladder management. The initial months of rehabilitation are daunting, yet paramount, for the successful achievement of goals following SCI. Patients with SCI need to learn to self-advocate and direct every aspect of their care. Knowledge body functions after an SCI is a vital educational need. Patients need to know how to predict, recognize, and respond to adverse health complications and what physical and psychologic challenges may arise as a result of SCI. Education is required for successful health maintenance, improved quality of life, and community reintegration in patients with SCI.²⁵ In a survey carried out across five primary care centers (PHC) in Riyadh, Alnaif reported that only 5% of the respondents were satisfied with the health education activities in the PHC.²⁶ The respondants reported that the primary sources of health information were television, friends, relatives and hospitals. Ministry of health reports that 98% of the population have access to health care services, but at the same time, public PHC centers suffer from a shortage of clinical staff including physicians and nurses.²⁷ Furthermore, it has been reported that there is lack of ancillary services at the PHC including insufficient drug supplies, lack of laboratory and radiological services, and delays in the results of investigative procedures.^28,29 Consequently patients prefer to travel to distant private outpatient clinics instead of visiting nearby PHCs. The above factors may explain the limitations of patients with SCI to receive a well-coordinated and comprehensive rehabilitation care in the community including bladder management. Studies have shown that lack of understanding of health issues among patients is associated with socio-demographic characteristics such as age, sex and level of education.²⁷ This was not studied in our patient population; however, it can be further investigated in future studies in patients with SCI.

The Saudi health care system was ranked 26th among 190 of the world’s health systems according to according to the World Health Organization (WHO).³⁰ The total budget for health and social development for the fiscal year 2018 is 133 billion Saudi Riyals (around 35 billion US dollars), with a total increase of 11% from the year 2017.³¹ There is significant allocation of health budget for ministry of health; however, the trend of patients towards accessing health care is concerning. Saudi citizens have free access to health care through more than 2000 primary healthcare centers and 420 hospitals.³² A health survey on more than 10,000 participants showed that Saudis do not seem to seek preventive treatments or care until after developing disease symptoms or reaching an advanced stage of illness despite the availability of health facilities and the free healthcare access in KSA.³² This needs to be investigated in depth to ensure optimal utilization of health care resources. Our research reflects similar challenges faced by patients with SCI; however, it is merely the tip of an iceberg.

It is important to mention that praying five times a day is a common practice in KSA which requires patients to perform ablution and ensure appropriate hygiene before the prayers. Leakage of urine, stools or passing of flatus usually requires repeating ablution. Though there are clear exceptions in illness, patients may prefer to comply with hygiene and ablution requirements prior to prayers. In those situations, training in activities of daily living and bladder program are modified to meet those needs. Ablution and prayers are major activities of daily living across Saudi population, which cannot be accurately recorded in conventional functional scales used in rehabilitation. Similarly, traditional clothes among men and women are quite different from western style dressing and the bladder training requires improvised techniques during rehabilitation.

Results of this survey cannot be generalized for Saudi population as it was conducted in a single center and has a small sample size. A large multicenter study is recommended using a standardized questionnaire on bladder management.

Conclusion

In the largest ministry of health rehabilitation hospital in Saudi Arabia, CIC was the most commonly used method of bladder management in patients with SCI. Compliance with CIC may be improved by ensuring the availability of catheters post-discharge. This may be achieved by contacting local resources accessible to the patient prior to discharge. Furthermore, appropriate education on bladder management is imperative during inpatient rehabilitation. Close follow-up strategies need to be adopted to ensure optimal compliance.

Acknowledgments

Authors gratefully acknowledge Dr Farooq Rathore for reviewing the manuscript and for his valuable suggestions.

Disclaimer statements

Contributors None.

Funding No funding received for the research.

Declaration of interest None.

Conflicts of interest No potential conflict of interest was reported by the authors.