Objectives: The prevalence of end-stage renal disease is increasing worldwide. It is also one of the main health problems in Pakistan. Currently, hemodialysis represents the main mode of treatment for patients with end-stage renal disease in this country. Despite 24-hour free dialysis at the Sindh Institute of Urology and Transplantation (Karachi, Pakistan), a significant number of patients do not turn up for regular dialysis or miss regular sessions of dialysis. We conducted this study to identify and highlight the factors leading to poor compliance with regular hemodialysis treatment despite free dialysis treatment offered at our center.
Materials and Methods: In 2014, 4565 patients with end-stage renal disease were registered at the Sindh Institute of Urology and Transplantation. Among these, 610 patients (13.4%) missed more than 2 sessions of dialysis and were included in the present study. Patients provided written informed consent before study participation. Data were collected from a questionnaire survey and analyzed by SPSS software (SPSS: An IBM Company, version 20.0, Chicago, IL, USA).
Results: Despite 24-hour dialysis facilities, the patient drop-out rate (779; 18%) was high. In addition, a significant minority of patients (610; 13.4%) was erratic in adherence to maintenance hemodialysis schedules, with > 2 missed appointments. The mean age of these 610 patients was 33.4 ± 7.4 years, and 345 patients (57%) were males. The main factors leading to poor compliance included cost of travel (33.2%), lack of affordable lodging and boarding facilities near dialysis center (30.9%), long distances from dialysis center (20.1%), and lack of family support (15.6%).
Conclusions: This study shows that there is significant drop-out and poor compliance rates for regular dialysis despite free dialysis facilities.
Key words : Compliance, Dialysis, Dropout, End-stage renal disease
The prevalence of end-stage renal disease (ESRD) is increasing worldwide, including in the developing world.1-5 It is also one of the main health problems in Pakistan. Estimated incidence of ESRD is 200 per million population (pmp) in Pakistan, equaling 18 000 new cases each year. Currently, hemodialysis represents the main mode of treatment for patients with chronic kidney disease or ESRD in this country.6-12 Pakistan is a developing country with an estimated population of 184 million and per capita income of $2566 (US dollars) per annum and total gross domestic product (GDP) of $232 billion. It spends only 0.8% of GDP on public health. Around 70% of the population resides in rural areas without renal support services. Against this backdrop of economic deprivation and scare facilities, over 90% of the ESRD population is disenfranchised from renal replacement therapy. Only about 10% of ESRD patients receive dialysis and 4% to 5% receive renal transplants at a rate of 15 pmp.13
Sindh Institute of Urology and Transplantation (SIUT) started as an 8-bed urology ward in 1972 in the metropolitan city of Karachi, Pakistan. Increasing numbers of stone patients presenting with associated renal failure necessitated the development of dialysis facilities in 1975 and subsequently transplant services in 1985. This institution offers quality medical services free to all the patients, irrespective of their cast, color, creed, or religious beliefs. Our dialysis program is integrated with transplant procedures and a life-long follow-up with free medications.7-9,11,13-16 Although every treatment at SIUT is provided free of cost, still there are access and other socioeconomic problems, which result in less than perfect compliance to treatment protocols.17-19 An informal survey by our department found that a significant number of patients do not turn up again for regular dialysis and many also miss more than one session of dialysis. This necessitated a systematic analysis of the factors leading to poor or noncompliance to the treatment program.
In the present study, we evaluated and aimed to highlight the factors responsible for irregular or missed dialysis in a situation where dialysis and transplant procedures are available freely with life-long follow-up facilities.
Materials and Methods
During 2014, 4565 patients with ESRD were registered at SIUT. Among these, 2883 (63.1%) were on regular dialysis, whereas 93 (6.4%) were transplanted with kidneys from living donors, 779 (17.1%) dropped out, and 610 (13.4%) were irregular with > 2 missed dialysis appointments. This last cohort formed the study population of this report and included patients of all ages and both sexes. The data were collected from a questionnaire survey, which included patient demographics, size of family, number of working people in the family, daily/monthly income, distance from SIUT, cost of travel to SIUT to get treatment done, and place of stay when coming for treatment at SIUT. All participants provided written informed consent before participation in the study. The study was conducted in accordance with the tenets of the Declaration of Helsinki.
Statistical analyses were performed with SPSS software (SPSS: An IBM Company, version 20.0, Chicago, IL, USA). Descriptive statistics were used. Means ± standard deviation were used for continuous variables and frequencies (percentages) for categorical variables.
Despite the free 24-hour dialysis facilities, patient noncompliance and drop-out rate (18%) were high at our center. In addition, a significant minority of patients (610; 13.4%) was erratic in adherence to maintenance hemodialysis schedule with > 2 missed appointments. The main demographic features of the latter cohort are shown in Table 1. As apparent in Table 1, the patient population with ESRD is young in our country and predominantly male patients. The main reasons for irregular and missed dialysis in these 610 patients are shown in Table 2. As shown in Table 2, the combined long distances and the cost of travel were the most common causes of missed dialysis, together accounting for more than 50% of the missed dialysis. The monthly cost of travel to SIUT for dialysis is shown in Figure 1. It should be noted that around 70% of the population live in villages with income of < 200 Pakistani rupees per day. Regarding the distances, a large number of our study patients resided more than 200 km from SIUT, with lack of direct public transport services from villages and small towns (Table 3). Lack of lodging and boarding facilities at treatment sites was also one of the main reasons, noted in 30.9% of the patients. As a result, many patients took shelter on roadside pavements devoid of any water supply, wash room, and privacy and facing unhygienic conditions. We searched for the nearest motels and hotels that were the least expensive and in close vicinity, ie, < 1 km from SIUT at cost of 350 rupees/day, within 2 to 3 km at 400 to 550 rupees/day, and within 1 to 2 km at up to 1200 rupees/day. Most of our patients simply cannot afford to pay these expenses. Those working on daily wages earn from 100 to 500 rupees/day and have an average of 5 to 7 dependents, whereas a gazetted officer may earn up to 35 000 rupees/month and have 4 to 6 dependents.
Another factor responsible for erratic compliance is related to male versus female bias. The treatment of male patients is preferred over females by the family, leading to lower female compliance. In our study survey, we found a 60% drop-out rate in female patients; that is, among the total number of dropouts, most were females.
Over the past 40 years, SIUT has developed a health care model that has resulted in a community government partnership, where doctors act as catalysts and the center of focus is patient care. Our center has embraced the philosophy that every human has the right to access health care free with dignity, irrespective of cast, creed, color, and religion.7-9,11,13-16 This institution has worked to provide lifelong state-of-the-art renal care facilities to all patients, free of cost. In a country where the health care budget is only 0.8% of the GDP, SIUT, with the help of philanthropists, has made it possible to provide all of these facilities. This is an autonomous body with transparency and accountability to both the community and government. In Pakistan, the estimated rate of ESRD is 200 pmp, whereas the reported dialysis facilities are available to 15 pmp. The present study highlights the fact that, despite getting extremely costly treatment free for all patients once they are in SIUT, reaching this facility is a problem for some patients. We have seen that about 18% of our patients dropped out from long-term dialysis, whereas another 13.4% were receiving dialysis irregularly, not in accordance with doctors’ prescriptions. Among the latter, more than one-half of patients were unable to come for regular dialysis because of long distances and the cost of travel. Around 35% of patients coming for dialysis had to travel 500 km to reach SIUT. Long distances have been also found to affect compliance rates in other studies.20-22 Travel is also associated with increased risk of bacterial infection, anemia, and inflammatory response.20 To tackle this problem, SIUT has established 7 satellite centers for dialysis in recent years: 4 in the same city of Karachi and 3 in other cities including 1 in Azad Kashmir. One satellite center, in the city of Sukkur, is now catering to 4 districts in the province of Sindh. This step will help provide renal care facilities to all near their home town and in turn may improve compliance with treatment.20-22
Socioeconomic factors are also important in affecting the quality of life of hemodialysis patients and their compliance.17-19,23 Most of our patients belong to low socioeconomic groups, and lack of family was found to contribute to noncompliance in around 15% of patients in this study. This is also directly linked to the lack of hygienic lodging and boarding facilities near the dialysis center. Obviously, the center cannot provide these facilities, but our medical social department makes every effort in finding suitable and low-cost hygienic places for stay. It is of note that socioeconomic conditions have a vicious relationship with ESRD. The disease poses huge economic burdens on the patient and families of ESRD patients.
Our study has certain limitations, too. This is a single center study. We selected only a subset of ESRD patients who showed poor compliance. We did not have a long follow-up of this cohort. Despite the above shortcomings, this survey has been an eye opener, and SIUT is now making a strong and determined effort in providing the dialysis facility closest to the doorstep of the patients to facilitate and maximize their compliance to dialysis treatment.
This study shows that there is a significant drop-out rate and poor compliance rate for regular dialysis despite free dialysis facilities. This is related to long travel distances, cost of travel, poor family support, and lack of affordable lodging and boarding facilities in the vicinity of the dialysis center.
Volume : 15
Issue : 1
Pages : 46 - 49
DOI : 10.6002/ect.mesot2016.O27
From the Departments of Medical Social Welfare and Urology, Sindh Institute of
Urology and Transplantation (SIUT), Karachi, Pakistan
Acknowledgements: The authors declare that they have no sources of funding for this study, and they have no conflicts of interest to declare. We would like to thank Professor Muhammed Mubarak for his valuable guidance in preparing this manuscript.
Corresponding author: Farida Mazher, Department of Medical Social Welfare, Sindh Institute of Urology and Transplantation, Karachi 74200, Pakistan
Phone: +92 219 9215752
Table 1. Main Demographic Characteristics of the Study Population (N = 610)
Table 2. Reasons for Irregular and Missed Dialysis (N = 610)
Table 3. Distance From Dialysis Center (N = 610)
Figure 1. Monthly Cost (in Pakistani Rupees) of Travel to Sindh Institute of Urology and Transplantation for Regular Dialysis