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Saudi Journal of Kidney Diseases and Transplantation
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Table of Contents   
ORIGINAL ARTICLE  
Year : 2020  |  Volume : 31  |  Issue : 6  |  Page : 1351-1360
Awareness, knowledge, and perception of chronic kidney disease patients at renal medicine outpatients’ clinic


Department of Renal Medicine, The Royal Hospital, Muscat, Oman

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Date of Web Publication29-Jan-2021
 

   Abstract 


Chronic kidney disease (CKD) is a major cause of morbidity and mortality. Awareness and education of CKD patients positively influence its medical management and significantly diminish the economic burden on public health. We conducted a pretested, structured, questionnaire-based survey to assess the awareness, knowledge, and perception of CKD patients at Renal Medicine Outpatients’ Clinic. The questionnaire was distributed to all CKD patients of at least one-year duration after their diagnosis. A total of 200 patients completed this study, mainly from the capital region. The mean age was 50 (17.1) years for males and 42.3 (16) years for females. The majority (74%) knew the reason for their referral to a nephrologist. Nearly 38% of the patients with CKD reported their shock and anger when informed about their kidney status by the nephrologist at the first encounter. Almost 64% of the patients reported having no knowledge of their CKD status and only 18% of the participants were aware that they were in CKD Stage 5, but according to the medical health computerized system, 44% were in CKD Stage 5. In addition, only 50% of them were aware of renal replacement therapy options. Patients and their family should receive enough information and education regarding the nature of kidney disease and the treatment options to allow them to make an informed decision about the management of their CKD. A well-informed decision-making in the treatment of CKD can provide health professionals with evidence on how to best deliver education programs for patients and their families. It may also enhance communication and improve the capacity of patient and family involvement in shared decision-making.

How to cite this article:
Al Rahbi F, Al Salmi I. Awareness, knowledge, and perception of chronic kidney disease patients at renal medicine outpatients’ clinic. Saudi J Kidney Dis Transpl 2020;31:1351-60

How to cite this URL:
Al Rahbi F, Al Salmi I. Awareness, knowledge, and perception of chronic kidney disease patients at renal medicine outpatients’ clinic. Saudi J Kidney Dis Transpl [serial online] 2020 [cited 2021 Mar 2];31:1351-60. Available from: https://www.sjkdt.org/text.asp?2020/31/6/1351/308344



   Introduction Top


Health knowledge describes an individual’s ability to recognize health information and involvement in the health-care management process and therefore, allows deduction of obstacles upon which a patient could easily participate in his/her health-care management decision.[1] Furthermore, low health literacy among the general populations has been found to correlate with poorer health outcomes and poorer use of health-care services.[2]

The incidence and prevalence of chronic kidney disease (CKD) is increasing progressively worldwide. The problem is even worse in developed countries. Hence, CKD is becoming a worldwide public health problem.[3] Therefore, it is of vital importance to have cost-effective strategies to combat the escalating cost of managing CKD. Thus, it is essential to educate end stage kidney disease (ESKD) patients in order to enable them to participate in making appropriate choices of therapeutic options for all stages of kidney diseases. This can help in the cost reduction in managing such a huge burden on health system, which is progressively rising every year. It is likely that CKD patients have inadequate understanding of their illness. However, although it seems obvious, there are many barriers to obtain such information.

Medical staffs are under pressure to provide the highest quality of health care to patients with CKD, which is continually becoming more challenging. In Oman, the number of patients with CKD is increasing dramatically, with 1% of population suffering from severe renal failure [glomerular filtration rate (GFR) <30 mL/min/m2] 9% from moderate (30–60 mL/min/m2), and 30% from mild renal dysfunction (GFR 60–90 mL/min/m2).[4] Knowledge of how an action impacts on individual’s health, parti-cularly if it involves modification of lifestyle habits, is a prerequisite for behavioral change to occur. Hence, this study aims to assess the awareness, knowledge, and perception of CKD patients at Renal Medicine Outpatients’ Clinic.


   Materials and Methods Top


This study was carried out at the Renal Medicine Department of the Royal Hospital. It is a pretested, structured, questionnaire-based survey to assess the awareness, knowledge, and perception of CKD patients at Renal Medicine Outpatients’ Clinic among adults (age ≥18 years) who were being followed up at the outpatient clinic between May and October 2018. Initially, a literature review was made through PubMed, upon which open-ended interviews, a focus group, and a questionnaire were developed. Furthermore, a pilot study was con-ducted to validate the questionnaire. Ten patients were approached to give their feedback on the clarity of the questionnaire, and hence the questionnaire was modified to its final version. A total of 24 questions took approximately 45–60 min to complete while patients waited for their clinicians’ review. The researchers distributed the questionnaires to the participants to answer and advised them to ask for any clarifications. After the collection of the answers, data were entered in an excel spreadsheet, confirmed by the two researchers, and analyzed by utilizing STATA 13 software (StataCorp, College Station, TX, USA). Ethical approval was obtained from the research committee at the Royal Hospital Number MESRC# 43/2018.


   Results Top


A total of 300 patients were approached and 200 patients agreed to participate in the study. Various data of the nonparticipants were available, and there were no differences in their demographics and laboratory data compared with that of responders. The mean age was 50 (17.1) years for male participants and 42.3 (16) years for female participants. Male participants constituted 57% of the total patients. The majority (54%) of the participants who were followed up with the Renal Medicine Department were from the capital, 20% from the coastal region, 18% from the interior region, and only 9% from the eastern region. The majority (66.4%) of our participants were educated ranging from primary to college level.

As shown in [Figure 1], the reasons of participants’ referral to nephrologist were reported as known by the majority (74%), whereas the reason for the referral was not known by 22% of the participants. A smaller group, 4%, stated that they were not sure about it.
Figure 1: Patients’ awareness of the reason of referral to Renal Medicine Department.

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When patients were specifically asked about the awareness of their kidney function percentage, almost 64% stated that they had no idea at all about their kidney function level, as shown in [Figure 2].
Figure 2: Patients’ awareness of their kidney function level.

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[Table 1] shows the comparison of patients’ percentage of awareness of their kidney function level (>15 or <15 mL/min/m2) compared to that reported in the medical computerized files. Nearly 18% of the participants stated that their GFR is <15, whereas medical records showed that 44% of them had GFR <15%.
Table 1: Comparison of patients’ awareness of glomerular filtration rate compared to that reported in the medical computerized files.

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The study found that 34% of the participants were illiterate and those educated were 66%. Educated people have a GFR of 49.2 (31.3) mL/min/m2, whereas illiterate had GFR of 31.7 (27.8) mL/min/1.73 m2 with P = 0.002. In addition, the GFR for educated males was 44.2 (32.0) mL/min/1.73 m2, for the illiterate male was 35.3 (27.8) mL/min/1.73 m2 with P = 0.20. For educated females, the GFR was 56.5 (28.9) mL/min/1.73 m2) and for illiterate females, it was 27.8 (27.9) mL/min/1.73 m2 with P <0.001.

Almost half of the participants (48.6%) stated that they were aware of the reasons for their referral to clinical dietician service. The reason for referring to dietician service was stated as follows: diabetes mellitus in 12.9%, hypertensive in 9.3%, high cholesterol in 16.4%, and 10% had more than one reason for the referral. However, 25% of the participants stated that they could not recall the reason for the referral. On the other hand, 26.4% of the study participants were not referred to a clinical dietician at all, as shown in [Figure 3].
Figure 3: Reasons for referral to clinical dietician service as stated by the study participants.

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When the patients were asked about their reaction toward the news of being labeled as CKD at first time, 38% stated that they reacted with anger and shock, whereas 30% of them stated that they were not expecting the news of being labeled with CKD. One-third (32%) of them could not recall their reaction.

When the participants were asked about their awareness of the uremic symptoms, 64% reported that they knew a few signs and symptoms and 36% of them stated that they have no idea about it, as shown in [Figure 4].
Figure 4: Uremic sign awareness.

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When the participants were asked about the referral to the surgeon for preemptive vascular access creation as predialysis preparation, 22% accepted referred, whereas 52% refused to be referred to surgeon. In addition, 26% were not advised by their nephrologist about referral to surgeon for preemptive vascular access creation. The reasons for the refusal of early access creation by the 52%of the participants are shown in [Figure 5].
Figure 5: Reason for refusal for early referral for access creation.

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When the participants were asked about the presence of a family member at their clinic visit, 40% reported that family members were accompanying them, whereas the majority (60%) of the participants had no one from their family member accompanying them during their clinic visits.

When the participants were asked about if their clinicians did provide them with enough time for discussion of various management strategies, 69% stated that they had enough time and 31% stated that they had not enough time for discussion.

When the participants were asked about the provision of educational material during renal replacement therapy (RRT) counseling, majority (63%) of the participants stated that they did not receive any and only 37% of them stated that they were provided with the information materials.

When the participants were asked if they shared their treatment decision with their family, 54% stated that they shared the decision regarding their RRT with their family, but 46% of them did not do so.

When the participants were asked about the number of medications they were taken, 62%had four to six types of medications taken per day, 11% had seven to 10 types of medications, 6% had more than 10 types of medication, 19% were not aware about the medication number, and 2% of the participants were not on any kind of medication. In addition, only 29% of the participants were aware of their medication’s names.

When the participants were asked about pharmacist service during collection of their medication, 71% stated that they were provided with explanation by the pharmacist and 28% stated that they were not given any explanation.

When the participants were asked about their overall impression of the nephrology service at RH, 64% stated to be excellent, 11% stated that the service is good, whereas 25% stated that service needs improvement or made no comment about it.


   Discussion Top


This is the first study to assess patients’ awareness and perception and evaluate their knowledge of CKD disease and its management, during their attendance at the Renal Medicine Outpatients’ Clinic. The majority were young with an overall mean age of 46.5 (17) years with a slight male predominance. The study showed that most (74%) of the participants knew the reason for referral to renal services, but 64% were not aware of their kidney function level and hence almost a third (67%) reacted with shock, anger, or surprised to the news of being labeled as CKD. Furthermore, only 18% knew that they have low GFR (<15 mL/min/m2), whereas medical records stated that almost half of the participants (46%) were in ESKD. Furthermore, only 40% had a family member accompanied the clinic with them, but 54% shared the discussion of RRT with their family. Two-third (69%) of the participants stated that they had enough time with their clinician, but only 37% received education materials and only 22% accepted referral to surgeons for preemptive permanent access. In addition, almost half of the participants (48.6%) were aware of the reasons for their referral to clinical dietician service. Furthermore, all patients were on ≥4 types of medications, but only 29% were aware of the names of their tablets. Furthermore, 28% stated that pharmacist did not explain the medications to them, and one-quarter stated that the renal medicine services needed improvement.

In Oman, there has been a progressive rise in the ESKD prevalence over the last three decades.[5] The incidence of ESKD on RRT was 21, 75, and 120/million population in 1983, 2001, and 2013, respectively. Moreover, at the end of December 2013, there were 2386 patients alive on RRT, 50.5% were on hemodialysis (HD), 45.3% were living with a functioning kidney transplant, and 4.2% were receiving peritoneal dialysis (PD).[6] With the aging of the population and the increasing prevalence of obesity, hypertension, and diabetes, the number of individuals at risk for CKD will continue to rise. In terms of comorbidities, 87% of the RRT patients had hypertension, 58% had diabetes, 27% had ischemic heart disease, 3% had cerebro-vascular disease, and 0.8% had respiratory disease.[6]

The majority (77%) of participants knew the reason for nephrology referral, but still many of them (64%) had no idea about their kidney function. In addition, 36% of them had no idea of the uremic signs by which they need to attend the nearest emergency department for initiation of dialysis. A cross-sectional descriptive study conducted in South-West Nigeria showed a similar misunderstanding and low level of awareness and knowledge of CKD, including those with risk factors.[7] Only 18% of our participants knew that their GFR >15 mL/min, whereas in the USA, the awareness of CKD among people with GFR 15–60 mL/min was 24.3%,[8] while in Australia, only 2.8% and 8.6% of the population studied were able to cite hypertension and diabetes, respectively, as the risk of CKD.[9]

In addition, 52% refused to be referred to a surgeon for preemptive access construction and they opted to be on conservative treatment till they develop emergency crisis. Creation of an arteriovenous fistula (AVF) when a patient reaches CKD stage 4, but is not yet on dialysis, has both risks and possible benefits. There are no confirmed estimated models to decide which patients will progress to ESKD (GFR <15) and thus should have an AVF created.[10] Hence, patients in Stage 4 CKD has to be counseled for two options that either they can proceed with preemptive AVF construction or start dialysis with a temporary access and proceed with AVF later.[9] Recent practice guidelines suggested an AVF as the ideal access for lower mortality and complication rates compared to central venous catheters (CVCs), and that patients should be referred for an AVF construction if their GFR is ≤15 mL/min.[11] In the present study, 22% of the participants accepted referral to surgeon for preemptive permanent access creation. However, those who refused claimed that they are well and have no uremic signs as their reasons for refusal to get fistula creation as preemptive process. It has been shown by a Canadian qualitative study that patient attitudes, preferences, beliefs, and values were important in deciding in AV creation.[12] In the same study, they found the following three major causes of refusal: previous personal experiences with a fistula, knowledge transmission and informed decision-making, and patient satisfaction with their diagnostic status.[12] These reasons were much evident among our participants. Therefore, the ESKD life plan is a strategy to cope with ESKD medical status, basically made by the patient in collaboration with the multidisciplinary management team. It should starts from the predialysis period, and it includes continuous care model from early CKD period till transitioning to ESKD. It aims to maximize ESKD modality choices and use for a specific patient’s predictable lifespan and specifically considers the patient’s current medical status; his/her current and future life goals; and his/her preferences, social support, functional status, and logistic and other practical viabilities. The predialysis access plan reflects the ESKD life plan, whereas the suitable access aligns with the modality for RRT (dialysis or transplant) to help those patients attain their life goals safely. For instance, a young active patient with residual renal function might best initiate PD in expectation of a living donor kidney transplant.[13] In the USA, patients on dialysis when asked about their preference for an AVF/AV graft versus a CVC,[14] only 24% of patients had no preference and 12% preferred a CVC (non-Black women had the highest CVC preference at 17%). The most common reasons for preferring a CVC were no puncture and no bleeding, avoidance of disfigurement, and better cosmestics.[13] The DOPPS survey reported that up to 20% of patients received little or no renal replacement education, suggesting that they did not fully understand the pros and cons of different types of vascular access.[15] In the present study, only 37% of the participants were provided with information materials. These data emphasize the need for better education and counseling from nephrology team.

In addition, a health-care professional must build a trusting relationship and explore all different choices of care with the help of various educational resources that should not only be received but also understood by the patient. However, patients’ preference should deserve an important consideration in the choices to create permanent access and to use a specific type. In general, patients are much more concerned about routine quality-of-life issues with their vascular access, such as pain with cannulation, and influenced by their prior experiences with a failed AV access that required painful interventions.[16] The aim of the multidisciplinary team management of ESKD patients is to sufficiently educate and prepare our patients for RRT, which includes dialysis, transplantation, and conservative care. However, dialysis options include HD, which can be center based (CBD) or done at home, and PD which can be continuous ambulatory PD or automated PD.[17]

All kidney replacement therapies have various advantages and disadvantages, which may make them more or less suitable for the patient according to his or her clinical and personal conditions. For instance, PD needs learning of practical abilities by the patient, and also requires a high level of accountability and competence for self-care.[18] However, it is beneficial in allowing the patient to remain self-governing, and to have more control over his/her own treatment and lifestyle. In-center HD is done by trained nursing staff within a health-care setting but can be difficult with an inflexible schedule of 4 h treatment per session and to visit the HD center for three times weekly. Most frequently, medical concerns do not limit the treatment choices, and patient preference should be the determining factor in the selection of treatment modalities.[19]

At our center, most CKD patients were referred from primary and secondary health services to tertiary hospital for CKD management and ESKD for RRT. In addition, most of the studies reported that education is linked with increased choice of PD among those patients if they received education in the early stages of their disease.[20] However, many patients do not receive predialysis education, and when they do, there is difference in how much they understood and gain from the education they receive, as well as in the educational methods and system of delivery and support. In the present study, 36% of the participants had no knowledge about the uremic symptoms and 50% of them were not aware of the various RRT types. Moreover, conservative care may also need to be considered in certain situations, where the disease will be managed by diet, medicines, and palliative care, but no dialysis meaning that survival will not be for a long. Hence, the multi-disciplinary team plays an important role in CKD patient’s management.[21]

In the present study, only 40% of the participants reported that their family members were accompanying them during their follow-up with nephrologist, despite that still 54% of the participants shared the decision regarding their RRT with their family. In addition, from psychological input, love and responsibility for family members provide many patients meaning and purpose in continued survival and acceptance of their diagnosis and its treatment. Furthermore, family and social support is crucial as the patient has to know when he/she shall start dialysis which includes a visit to the center three times/week, and if on home dialysis (PD), has to get one of his/her family members to be a 2nd trainer. Thus, upon the start of dialysis, patients suffer disruption of their routine daily activities and their family life. Hence, they must share decision with the family members as they will be part of the management strategy. One of the quantitative studies to identify reasons why patients refuse RRT was conducted in Singapore that showed lack of family and social support as the focal reason why patients refuse RRT and suggested that the health-care professionals who counsel the patients should actively address social and caregiver matters during RRT counseling.[22]

The discussion time between the providers and patients is importance; although patients may have the general knowledge of CKD and be aware of their individual risk, they cannot know their individual CKD status or obtain appropriate treatment without provider awareness, testing, and communication.[23] This is well illustrated in the present study, where 69% of the participants stated that they had enough time to discuss with the nephrologist during predialysis counseling, but 31% stated that they had not. Furthermore, many patients have not received any educational materials to learn about their diagnosis and available treatment.

Furthermore, predialysis care is provided by the multidisciplinary team, including, a physician, a nurse, a dietician, and a social worker, a pharmacist who explains information on the drug’s needs, and a psychologist expert, which could be a specialized nurse for psychological support when required.[24] In addition, change of lifestyle and dietary habits can slow the progression of CKD.[25] Even though the non-compliance of medicine in patients with CKD is observable as most patients had to take from four to six types of drugs, the clinical pharmacist should take a definite role to remind those patients about the importance of taking medication as prescribed both by dose and timing.[26] In the current study, the participants stated their good impression about the education provided by the clinical pharmacist, especially about the dose and time of the drugs intake.

Globally, diabetes mellitus is the most common cause of CKD, with an increasing number of patients suffering from early kidney disease dramatically as the kidney is one of the target organs for diabetes. Similarly, arterial hypertension is also a leading cause of CKD. Moreover, sugar and blood pressure control, in addition to restricting protein intake, delays the progression to ESKD.[27] In the present study, most of the participants have been referred by their clinical dietician because of diabetes mellitus, high blood pressure, or high cholesterol. Change of lifestyle and improved renal diet can play a good role in slowing the progression of CKD,[28] especially for those in early stages, as evidenced in this study.

Management of CKD requires recognition of individual risk factor and appropriate laboratory testing because symptoms generally do not manifest in the earlier stages of CKD. Early-stage CKD also can lead to several complications, such as anemia and bone mineral metabolism disorders and poor outcomes, including cardiovascular events, morbidity, and mortality.[29] Despite these known adverse consequences of CKD, most people with the disease, especially prior to ESKD, have inadequate understanding of their illness of CKD, which remains unacceptably low. However, recent attempts made to increase it include dissemination of clinical practice guidelines and recommendations for patients with CKD or its risk factors to providers, celebration of community awareness events such as World Kidney Day, and free screening efforts.[30] In addition, early referral to nephrologists has been shown to improve outcomes for those who progress to ESKD.[31]

There is also an educational need to present the essential points of these guidelines in an explicit arrangement so that clinicians especially at primary care can quickly present them into their day-to-day practice to these patients. There are several reasons for this. First, guidelines for hypertension and diabetes are older and better exposed, whereas, K/DIGO guidelines are relatively new, and some are still being established.

The health system in Oman is very excellent that have received an international recognition by World Health Organization. The health work force is also is well organized to adopt and advances the highest health care.[32],[33] Early referral provides more encounters and engagement with various members of the multi-disciplinary kidney team including nephronlogist, nurse, clinical dietician, pharmacist, social worker, and psychiatrist. These benefits encouraged many recommendations for timing of referral, both for predialysis and long-term renal follow-up.[21] In addition, well-timed referral can allow RRT to be initiated at higher levels of residual kidney function, which may be useful as residual renal function is a predictor of mortality and morbidity in patients with end-stage renal disease on RRT programs.[34]

Moreover, nephrologists cannot work alone to reach the best quality of care for patients with CKD as most patients refer with multiple comorbidities including diabetes and hypertension. In addition, several mineral metabolism abnormalities occur in CKD patients, which include hyperphosphatemia, hyper-parathyroidism, and Vitamin D metabolism. Imbalances of these important minerals are related with increased morbidity and mortality among patients with CKD. Treatment needs a multi-disciplinary team approach in which the dietitian plays a pivotal role.[35]

A Canadian study found that nephrologists consistently encounter more complex patients than other medical sub-specialties.[36] With the increase in CKD patients detected with various comor-bidities, there may be a requirement of more complex management to prevent the consequences of disease progression.[37] In our study, most of the participants reported having a good quality of care received from the nephrologist at the Royal Hospital. Nephrology department has predialysis clinic management team including nephrologist, nephrology educator nurse, and other specialists such as social worker, clinical dietician, and clinical pharmacist. However, there is still a good proportion of patients who require a service improvement and hence utilization of multi-disciplinary team to overcome various issues and concerns of patients and improve the care provided. A systemic review concluded that well-designed, interactive, frequent, and multi-faceted educational interventions that include both individual and group participation may improve knowledge, self-management, and patient outcomes.[30]


   Conclusion Top


A large proportion of patients reported a need for more information about their kidney problems that they suffer from, and many patients had false knowledge or uncertainty about the basic facts of their illnesses. Repeated positive engagements and shared decisions of patients and their family are of paramount importance in curtailing the burden of CKD in our society.

Earlier recognition of CKD along with education strategies could slow progression, prevent complications, and reduce cardiovascular-related negative outcomes. Patients and their family should receive enough information and education regarding the nature of ESKD and the options for the treatment to allow them to make an informed decision about the management of their CKD.

Conflict of interest: None declared.



 
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Correspondence Address:
Issa Al Salmi
Department of Renal Medicine, The Royal Hospital, P. O. Box: 1331, Code 111, Muscat
Oman
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DOI: 10.4103/1319-2442.308344

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