| Abstract|| |
In Pakistan, patients with chronic kidney disease (CKD) are commonly diagnosed at a late stage. There is little information about the refusal of hemodialysis by hospitalized CKD patients who need hemodialysis (HD) and reasons for acceptance and refusal among these patients. All patients with Stage V CKD who had medical indications to undergo HD and were hospitalized at a tertiary care facility over a six-month period were invited to participate in this study. Patients were surveyed regarding acceptance or refusing of HD and reasons for their decisions. Demographic, socioeconomic, and clinical characteristics of patients were compared between patients who accepted or refused HD. A total of 125 patients were included in the study. The mean age of the patients was 47.9 ±12.1 years. The mean duration of diagnosis of CKD was 2.5 ± 0.6 months. Of all patients, 72 (57.6%) agreed to do HD and 53 (42.4%) refused HD. Patients with arteriovenous fistula in place (27.1 vs. 9.1%, P 0.02) and those in the middle- or higher-income group (64.4% vs. 38.6%, p = 0.03) were more willing to undergo HD. Trust in doctor's advice (86.1%) was the most common reason for acceptance of HD. Frequency of HD per week (52.8%), lifelong and permanent nature of HD (50.9%), advice by family members or friends (37.7%), perception of poor quality of life on HD (35.8%), and fear of HD needles and complications during HD (33.9%) were the most common reasons for refusal. Refusal of HD is common among hospitalized CKD patients with medical indications to undergo HD, especially in lower income group.
|How to cite this article:|
Shafi ST, Saleem M, Anjum R, Abdullah W, Shafi T. Refusal of hemodialysis by hospitalized chronic kidney disease patients in Pakistan. Saudi J Kidney Dis Transpl 2018;29:401-8
|How to cite this URL:|
Shafi ST, Saleem M, Anjum R, Abdullah W, Shafi T. Refusal of hemodialysis by hospitalized chronic kidney disease patients in Pakistan. Saudi J Kidney Dis Transpl [serial online] 2018 [cited 2021 Apr 21];29:401-8. Available from: https://www.sjkdt.org/text.asp?2018/29/2/401/229270
| Introduction|| |
Chronic kidney disease (CKD) is a growing public health problem worldwide. CKD is associated with high morbidity and increased utilization of health-care resources. The prevalence of CKD in the USA is 4.7%. Studies based on health screening camps and community in Pakistan has shown a prevalence of 16.6%–25%., In a majority of patients in Pakistan, CKD remains undiagnosed. Patients often present in advanced stages of CKD. At this stage, no treatment to reverse or slow down progression of CKD can be offered.,
The treatment of advanced stage CKD is either dialysis or renal transplant. In Pakistan, patients often refuse hemodialysis (HD). Median survival after withholding HD is about six months. In one study in outpatient setting in Lahore, 67.3% of patients who were offered HD first time refused dialysis. There is a limited data on acceptance rate of HD in patients with advanced CKD who are hospitalized as these patients are sick and may be more willing to accept HD.
Identification of reasons and patient's characteristics associated with either acceptance or refusal of HD may lead to the development of better educational strategies to alleviate patient's concerns and fears regarding HD.
The objective of this study is to determine the frequency of acceptance and refusal of HD by hospitalized advanced CKD patients with medical indications to undergo HD. In addition, we aim to identify reasons and patients characteristics associated with their respective decisions.
| Methods|| |
The study design was cross-sectional in nature. The study was conducted at Nephrology ward of a tertiary care facility. Informed consent was obtained from the patients.
Sampling technique was nonprobability consecutive sampling. Sample size of 100 was calculated with 95% confidence level, 10% margin of error, and taking expected acceptance rate of HD as 50%. The study was approved by the institutional review board.
Patients included in the study were between ages of 18 and 80 years, had CKD V, and had medical indications to initiate renal replacement therapy (RRT), that is, HD. CKD V was defined as estimated GFR (eGFR) of <15 mL/ min/1.73 m2 for three-month duration and/or presence of chronic kidney damage as determined on the renal ultrasound. Kidney damage on renal ultrasound was considered chronic if there was increased echogenicity, poor corticomedullary differentiation, and/or reduced kidney size. eGFR was calculated by CKD-EPI formula as follows: GFR = 141 × min(Scr/κ1)α × max(Scr/κ1)-1.209 × 0.993Age × 1.018 [if female], Where Scr is serum creatinine (mg/dL), κ is 0.7 for females and 0.9 for males, α is –0.329 for females and -0.411 for males, min indicates the minimum of Scr/κ or 1, and max indicates the maximum of Scr/κ or 1. Indication to initiate RRT was considered to be present if patient had one or more of the following conditions: (a) uremic pericarditis; (b) uremic encephalopathy; (c) significant bleeding attributable to uremia; (d) fluid overload refractory to diuretic therapy; (e) persistent metabolic abnormalities, that is, hyperkalemia and metabolic acidosis refractory to medical therapy; and (f) persistent nausea and vomiting. Final decision to offer HD to patient was made by an experienced nephrologist. Patients already on HD were excluded from this study. All patients were explained the risks and benefits of HD.
Patient's history, medical records, and laboratory data were reviewed to obtain information on patient's age, sex, residence, educational status, marital status, history of hypertension, diabetes mellitus, cardiovascular disease, chronic liver disease, serum creatinine, and electrolytes.
Cardiovascular disease was defined as known prior history of coronary artery disease, cerebrovascular disease, or peripheral vascular disease based on history and review of prior medical records. Patients were assigned two classes based on income: “lower” and “middle and higher.” Patient was considered to be in lower income class if daily income was less than twice the upper limit of accepted poverty line, that is, $2 per household person.
All participating patients were surveyed regarding their prior care, alternative medication use, decision to initiate HD, reasons to accept HD, and reasons to refuse HD. The survey instrument was developed by the project investigators who had significant experience in counseling and caring for patients with CKD. The questions went through multiple revisions and were assessed for their clarity and readability. Due to concerns of lack of proper education of patients and their caregivers, the survey was filled out by junior physicians taking care of these patients. Junior physicians were properly briefed beforehand on how to phrase these questions to ensure proper understanding and consistency among patients.
| Statistical Analysis|| |
Continuous parametric variables were reported as means ± standard deviation, and categorical variables were expressed as percentages. Patients were divided into two groups based on whether they accepted or refused HD. Categorical variables were compared using the Chi-square test and continuous variables were compared using t-test. All statistical analyses were performed using Statistical Package for the Social Sciences (SPSS) version 20.0 (Chicago, IL USA). For all tests, P≤0.05 were considered statistically significant.
| Results|| |
A total of 125 patients were included in the study. All patients had CKD stage 5 and had medical indications for HD as determined by nephrologist based on established indications of HD. The mean age of patients was 47.9 ± 12.1 years. The mean duration of diagnosis of CKD was 2.5 ± 0.6 months. Demographic, socioeconomic, and prior care-related characteristics of the study population are shown in [Table 1]. Of note, 75.2% of patients had seen another kidney specialist and 33.6% consulted with more than one kidney specialists. Alternative therapy use was present in 53.6% of all patients, 48% of all patients had already been advised arteriovenous fistula (AVF), and 19.2% of all patients had AVF in place.
|Table 1: Demographic, socioeconomic, and prior care-related characteristics of study population.|
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Of all patients, 72 (57.6%) agreed to do HD, while 53 (42.4%) refused HD. Comparison of characteristics of patients who agreed and who did not agree to do HD are shown in [Table 2]. Patients with AVF in place and those in middle- or higher-income group were more willing to undergo HD.
|Table 2: Comparison of characteristics of patients with Stage V CKD who agreed or didn't agree to undergo hemodialysis.|
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Reasons for accepting HD are shown in [Table 3]. Of all patients, 54 (75%) cited more than 1 reason for accepting HD. Trust in doctor's advice was the most common reason given by patients to initiate HD.
Reasons to refuse HD are depicted in [Table 4]. Of all patients, 43 (81.1%) mentioned more than 1 reason to refuse HD. Permanent and lifelong nature of HD treatment and twice or thrice weekly frequency of HD were the most common reasons given by patients.
Patients who refused HD were also asked about their future plans. Of patients who refused HD, 54.7% stated that they would continue with medical treatment only and 26.4% would seek alternative therapy. Rest would seek opinion from family members (13.6%), opinion from another physician (6.8%), had the desire to undergo preemptive kidney transplant (6.8%), or were unsure of what to do (9.1%).
| Discussion|| |
Our study showed that among hospitalized CKD patients who had indications to undergo HD, 57.6% of patients accepted HD and 42.4% of patients refused HD. Patient in middle- or higher-income group and patients with AVF in place were more likely to accept HD. Acceptance rate of HD in our study was better compared to that of 33% in a study by Anees et al. Difference in acceptance rate is likely explained by difference in patient care setting. Patients in our study were hospitalized where they may be more prone to accept HD due to gravity of their illness. Our study results are comparable to an outpatient-based study in Spain where the acceptance rate of HD was 61% despite difference in socioeconomic, cultural values, and health-care resources between two countries.
In this study, nearly three-fourth of all patients had already seen a kidney specialist and one-third of all patients have visited more than one kidney specialists. The average duration of diagnosis of CKD is 2.5 months. More than half of patients had already received advice for HD and AV fistula placement. Our study highlights that most patients with CKD have been diagnosed late consistent with another local study. However, once diagnosed, there is awareness of and access to nephrologist even in patients who are residing in the rural area. A significant proportion of patients have pursued more than one kidney specialist or alternative therapy. In a developing country like ours with limited financial and health-care resources, early detection of CKD through screening of high-risk patients is of paramount importance. Early referral to nephrologist has been found to be associated with better outcome, reduction in progression of CKD, and improved survival.
In our study, we found that 53.6% of all patients had used some form of alternative therapy including Hakeem medication, Homeopathic medications, or spiritual care. Alternative medication use also is common in CKD and ESRD patients in other parts of the world. Belief in alternative therapy was present in 83.2% of all CKD patients in Nigeria. In other studies, complementary and alternative medication use was present in 26%, 61%, and 49% of HD patients in India, USA, and Germany, respectively.,, In patients with CKD, dietary and herbal supplements were used by 34%–52% of all patients., Some of these complementary medicines can be potentially toxic and may even worsen kidney function. Most patients use these medications on the recommendation of family members, friends or fellow patients, or in response to advertisement by alternative medication prescribers. Other reasons include frustration with lack of cure of advanced CKD with traditional medications and high cost of care. Patients and their caregivers should be appropriately counseled on risks of using complementary and alternative medications.
Patients who agreed to do HD were more likely to have AV fistula in place. Patients with AV fistula likely have already accepted the irreversible nature of diagnosis, have exhausted other options and/or have trust in their physicians. Patients in lower income group were more likely to refuse HD. Cost of HD per year is about 8 times of annual per capita income in Pakistan. Although dialysis services are provided for no cost in government hospitals in Punjab, number of patients with ESRD far exceeds the available free facilities. Rate of acceptance in patients may be improved with the expansion of existing free dialysis facilities by the government or philanthropists. Interestingly, we did not find any difference in other variables, especially the educational status between patients who accepted or refused HD. As reasons for decision-making process were explored, it became apparent that apart from socioeconomic status, patient's perceptions, beliefs, trust in doctor, prior experiences, and input from caregivers play an important role in decision-making process rather than the level of education.
Patients who refused HD cited multiple reasons for refusal. Most reasons were related to HD which included frequency, lifelong nature of dialysis, fear of HD catheter and needles, and also complications or death during dialysis. Adverse outcome in other family members after initiating HD and advice from family members were other important reasons for refusal. Our study results are consistent with another local study, where nearly three-fourth of patients refused dialysis on account of fear of dialysis procedure. In a study in Spain, patient factors such as advanced age, comorbidity, and functional disability were associated with refusal to start HD. Difference in results is likely explained by difference in socioeconomic, cultural values, perceptions, and access to health-care resources. Adverse outcomes in family members on HD create a negative feedback for prospective patients who are candidates for HD. In Pakistan, multiple factors are responsible for poor outcomes on HD including late referral, anemia, malnutrition, inadequate HD, and lack of availability of qualified nephrologist at all dialysis facilities.,,,
Alleviating fear and improving understanding of HD and other RRT options may not be feasible through routine standard care by nephrologists. Routine care and counseling have been found to be associated with limited improvement in patients understanding of disease and RRT options in several studies., More intensive and innovating multidisciplinary counseling including handout materials, video demonstration and opportunity to visit dialysis facilities, and interaction with dialysis staff and patients may help in alleviating concerns and fears of patients and their caregivers. A comprehensive educational program in pre-ESRD patients labeled as “Treatment options program, TOPs” at a large dialysis organization in the USA has resulted in increased selection of home dialysis therapy and higher rate of permanent vascular access in participants of that program.
There are a few limitations in our study. This is a single-center study with limited number of patients. Quantitative rather than qualitative assessment of reasons for acceptance or refusal by patients was assessed. In addition, there was no follow-up on patients who either accepted or refused HD.
In summary, 42.4% of hospitalized patients with advanced CKD who had medical indications to undergo HD refused HD. Patients with AV fistula in place and higher income level were more likely to accept HD. Permanent and lifelong nature of HD, frequency of HD and fear of HD procedure, and complications during HD were the most common reasons for refusal of HD. Multidisciplinary and innovative educational strategies need to be evolved to improve understanding of patients and their caregivers regarding HD. Expansion of free dialysis services under the supervision of qualified nephrologists may help in more acceptance and improving the confidence of patients and their caregivers in HD.
Conflict of interest: None declared.
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Dr. Salman Tahir Shafi
Department of Nephrology, Sharif Medical and Dental College, Lahore
[Table 1], [Table 2], [Table 3], [Table 4]