Differences in Renal Diet and Medical Symptom Knowledge in Diet Adherent and Diet Nonadherent Adult Hemodialysis Patients

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DIFFERENCES IN RENAL DIET AND MEDICAL SYMPTOM KNOWLEDGE IN DIET ADHERENT AND DIET NONADHERENT ADULT HEMODIALYSIS PATIENTS

A thesis submitted to the Kent State University College of Education, Health and Human Service in partial fulfillment of the requirements for the degree Master of Science in Nutrition and Dietetics

Kelsey Lynn Hagens

May 2019

A thesis written by Kelsey Lynn Hagens B.S., Indiana University of Pennsylvania, 2017 M.S., Kent State University, 2019

Approved by

______, Director, Master’s Thesis Committee Natalie Caine-Bish ______, Member, Master’s Thesis Committee Eun-Jeong (Angie) Ha ______, Member, Master’s Thesis Committee Tanya Falcone Accepted by

______, Director, School of Health Sciences Ellen Glickman ______, Dean, College of Education, Health, and Human Services James C. Hannon

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HAGENS, KELSEY LYNN, M.S., May 2019 Nutrition and Dietetics

THE EFFECT OF RENAL DIET AND RENAL SYMPTOM KNOWLEDGE ON DIETARY ADHERENCE IN ADULT HEMODIALYSIS PATIENTS

Director of Thesis: Natalie Caine-Bish, Ph.D, R.D., L.D. pp 111

Most end stage renal disease patients utilize hemodialysis as a treatment to sustain kidney function. Hemodialysis requires adherence to a complex diet that restricts nutrients in order to reduce complications and improve quality of life. However, dietary nonadherence is extremely prevalent in this population with many etiologies considered.

The purpose of this study was to determine if renal nutrition knowledge differed between patients who are adherent and nonadherent to a renal diet. Participants were adult hemodialysis patients with a diagnosis of end stage renal disease who completed a questionnaire that tested their knowledge of renal diet components and the medical complications associated with nonadherence. A series of laboratory results consisting of serum phosphorus, serum potassium, and interdialytic weight gain divided the population as adherent or nonadherent. Data analysis showed no significant difference in renal knowledge scores between adherent and nonadherent participants (p<0.05). This indicates that education is not a significant factor in dietary nonadherence. Methods of behavior change should be explored to improve adherence.

ACKNOWLEDGEMENTS

I would first like to express my appreciation to Dr. Natalie Caine-Bish for advising me through this process that initially seemed so intimidating and unattainable.

Her persistent help and support kept me motivated through all of the bumps in the road. I would like to thank my committee members, Dr. Eun-Jeong Ha and Tanya Falcone, who took time to provide crucial advice and knowledge that improved my research drastically.

Additionally, I would like to thank Judy Nagy for her passion to the field of renal nutrition that inspired this study. I truly appreciate the time and effort you put into helping me throughout this process. I would also like to thank the entire staff at CDC that allowed this research to happen and the patients who participated. You made my first research experience more enjoyable than I ever could have imagined.

TABLE OF CONTENTS

Page

ACKNOWLEDGEMENTS………………………………………………………………………iv

CHAPTER

I. INTRODUCTION…………………………………….…...….………………...... 1 Statement of the Problem…………………………………………………….….....3 Purpose Statement………………………………………………………...... 4 Hypothesis………………………………………………………………………...4 Operational Definitions…………………………………………………………....5

II. REVIEW OF LITERATURE……………………………………………....…….7 The Kidney………………...... 7 Physiology…………………….……………………………………..…...7 Glomerular Filtration Rate..………..……………………….…..8 Chronic Kidney Disease...…….……………...…………………………….…..9 Etiology..…………….……………………………………………...... 10 Glomerulonephritis.….……………………………………...…10 Diabetes Mellitus….……………………………………..……11 Hypertension……………...... ……………………………..…12 Polycystic Kidney Disease……….……………………...…....12 Acute Kidney Injury..………….………………………...…....14 Stages of CKD…..…………..……..………………………….…..…15 Stage 1..…..…………………………….…………….……....15 Stage 2……………….……………………..……..…....…….16 Stage 3……………....…….………………………………….17 Stage 4………….………………………….…………….…...18 Stage 5…………………....…………………………….….…18 End Stage Renal Disease……….……….....……………………………....….19 Epidemiology…….……………..………………………………...…19 Dietary Assessment…...………...……...……………….…………...19

Laboratory Assessment.…..…..…..……...……………………..…..21 Treatment……………...... …...……………………………………24 Medications…….….……………………...... ………..….24 Phosphorus binders..……………………………....24 Erythropoietin...……………………….…………..25 Active vitamin D………………..………..………..25 Dialysis…….………….….……………..…………..……26 Kt/V...... …...……………………………………26 Hemodialysis..…………………...... ………..….27 Peritoneal dialysis…..…………………………....28 Kidney Transplantation..…………………….…………..29 Medical Nutrition Therapy..…………..………..………..30 Energy.……….….……………..…………..……30 Protein....…...……………………………………31 Phosphorus……………………...... ………..….31 Potassium………..……………………………....32 Sodium……...……………………….…………..32 Fluid…………………………..………..………..33 Vitamin D…....….……………..…………..……33 Calcium…....……………………………………33 Comorbidities of ESRD patients…...……………...... ………..….34 Diabetes………………..…..…………………………....35 Cardiovascular Disease..…………………….…………..35 Malnutrition……………....…………..………..………..36 Infection Concerns of ESRD Patients..…………..…………..……36 Factors Affecting Nonadherence in Hemodialysis Patients…….…………….…..38 Psychological Factors.…………………………………………...... 39 Social Factors…………….……………………………………...... 40 Education Factors…..….……………………………………..……42 Self-efficacy…………………...... ………………………………44

III. METHODOLOGY……………………………………………………………....47 Overview….……………………………………………………………………..47 Participants.……………………………………………………………………...47 Laboratory Results………..……………………………………………………...48 Instrumentation…….………………………………………………………….…48 Questionnaire Development……………………………………………...48 Questionnaire Components……………..………………………………..49 Part I: Nutrition Knowledge and Medical Symptom Quiz………49 Part II: Demographics and Health Information.…..……….…….50

Data Collection Procedures….………………………………………………….50 Data Analysis Procedures…….…………………………………………………51

IV. JOURNAL ARTICLE…………………………………………………………....53 Introduction…….………………………………………………………………..53 Methodology...…………………………………………………………………..55 Participants………………………………………………………………...55 Review of Laboratory Results……………………………………………..56 Instrumentation…..………………………………………………………...56 Data Collection Procedures…...…………………………………………...58 Data Analysis Procedures...………………………………………………..58 Results…....……………………………………………………………………….59 Demographics……..………….…………………………………………...59 Laboratory Results…………….…………………………………………..60 Knowledge Questionnaire…….…………………………………………...60 Discussion………..………..……………………………………………………...64 Characteristics of Study Population..……………………………………..64 Laboratory Results...……………………………………………………...65 Renal Nutrition and Medical Symptom Knowledge……………………...66 Limitations………………………………………………………………………..68 Applications.……………………………………………………………………...69 Conclusion………..……….……………………………………………………...70

APPENDICES………………………..………………………………………………………….71 APPENDIX A. LABORATORY STANDARDS…………………………………………72 APPENDIX B. RENAL NUTIRITION KNOWLEDGE QUESTIONNAIRE……..….....74 Part I: Renal Nutrition Knowledge Questionnaire……...….……..… …………..75 Part II: Demographics……….….……..……..…………..………...………….....78 APPENDIX C. QUESTIONNAIRE BY DUROSE ET AL………………………………80 APPENDIX D. STUDY CONSENT FORM….…………………………………………..88 APPENDIX E. HIPAA FORM………………..…………………………………………..91

REFERENCES……………………………………………………………………………..……94

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CHAPTER I

INTRODUCTION

Chronic kidney disease (CKD) is a steady decline in renal function (Mahan,

Escott-Stump, & Raymond, 2012). This decline can be stable and last many months or can rapidly progress to kidney failure. CKD is categorized into stages that are determined by glomerular filtration rate (GFR) and other factors that show evidence of kidney disease (Mahan, Escott-Stump, & Raymond, 2012). CKD affects nearly 1 in 8 adults globally, with approximately 2% of these individuals progressing to stage 5, also known as end stage renal disease (ESRD) (Lambert, Mullan, & Mansfield, 2017). Renal replacement therapy, or dialysis, is required to sustain life once a patient reaches ESRD

(Barnett, Li Yoong, Pinikahana, & Si-Yen, 2008). Hemodialysis is the most common treatment for ESRD patients and requires attendance three times a week to remove uremic toxins and excess water that the kidneys no longer can. Although hemodialysis is performing the main function of the kidneys, a proper diet is necessary to minimize the accumulation of toxins, electrolytes, and fluid in the body between treatments (Barnett,

Li Yoong, Pinikahana, & Si-Yen, 2008).

The renal diet is extremely complex and involves potential restrictions of phosphorus, potassium, sodium, and fluid (Durose, Holdsworth, Watson, and

Przygrodzka, 2004). Phosphorus is crucial for the formation of bone and other tissues

(Nutrition and Hemodialysis, 2013). Phosphorus is a mineral that is abundant in dairy products, beans, nuts, colas, and processed foods, and often needs to be limited by dietary

restriction and/or phosphorus binders. Potassium helps the muscles and heart work properly and is found in certain fruits and vegetables, milk, and meats. Sodium, found in many snack foods, canned and frozen foods, sauces, and soups, can cause our body to hold on to extra fluid when consumed in excess amounts. Fluid is considered anything that is liquid at room temperature. Excess fluid intake can cause swelling, shortness of breath, and increases in blood pressure. Lack of control of these nutrients leads to medical complications for the patients including itching, muscle pain, heart rhythm disturbances, shortness of breath, and edema (Nutrition and Hemodialysis, 2013).

Although adherence to the renal diet improves quality of life, increases life expectancy, and reduces the risk of medical complications, there is still a lack of adherence among the hemodialysis patient population (Durose, Holdsworth, Watson, and Przygrodzka, 2004).

In hemodialysis care, a patient is considered to lack compliance if they skip sessions, shorten their treatment time, refuse to take medications, or do not follow the prescribed diet (Oquendo, Asencia, & de la Nieves, 2017). Lack of diet compliance is estimated to be as much as 85% of hemodialysis patients (Oquendo, Asencia, & de la

Nieves, 2017). Factors that are associated with nonadherence include but are not limited to psychological, social, self-efficacy, and education (Taskapan et al., 2005; Mousa,

Ataba, Al-ali, Alkaiyat, & Zyoud, 2018). Due to the complications of hemodialysis such as stress, dietary restrictions, and painful symptoms, psychological disorders such as depression are extremely prevalent in the hemodialysis population (Ravaghi et al., 2017).

The high demands of hemodialysis affect social relationships and limit the patient’s ability to work (Georgianni et al., 2016). Also, if hemodialysis patients lack the self-care

and confidence to improve their health, this can negatively affect quality of life and lead to noncompliance (Mousa, Ataba, Al-ali, Alkaiyat, & Zyoud, 2018). Education is a factor related to dietary adherence that can be easily managed with the help of a registered dietitian. It is crucial for patients to comprehend their prescribed renal diet and medications. Therefore, many studies have been performed that aim to educate ESRD patients with dietary factors and monitor how it correlates with lab results (Tsai et al.,

2016; Durose, Holdsworth, Watson, & Przygrodzka, 2004). Measuring a patient’s dietary knowledge is crucial for distinguishing between patients that simply do not know and patients that intentionally do not adhere to dietary restrictions.

Statement of the Problem

As end stage renal disease (ESRD) increases by 5% per year, the need for hemodialysis increases, leaving patients to adhere to a complex diet with many restrictions (“Statistics,” n.d; Durose, Holdsworth, Watson, & Przygrodzka, 2004.).

Adherence to a renal diet is extremely important for hemodialysis patients as their medical complications, quality of life, and life expectancy rely on it. However, despite the known importance of dietary restrictions, dietary adherence falls by the wayside among hemodialysis patients (Durose, Holdsworth, Watson, & Przygrodzka, 2004).

Dietary nonadherence may be intentional or unintentional, but has the same negative patient outcomes (Clark, Farrington, & Chilcot, 2014). One single determinant of nonadherence cannot be pinpointed, as many studies have identified numerous factors such as psychological, social, self-efficacy, and education (Taskapan et al., 2005;

Gerogianni et al., 2016; Mousa, Ataba, Al-ali, Alkaiyat, & Zyoud, 2018; Durose,

Holdsworth, Watson, & Przygrodzka, 2004).

It is important to know if lack of dietary knowledge can be related to dietary adherence, as this will affect the treatment regimen. There is limited research that investigates a direct relationship between sufficient renal dietary knowledge that involves numerous nutrients (phosphorus, potassium, sodium, and fluid) and higher dietary adherence. There is also limited research regarding patient knowledge of medical symptoms involving these nutrients. Lack of adherence in the hemodialysis population may be easily addressed if a reason is due to lack of knowledge. If lack of knowledge is attributable to nonadherence, it would be assumed that patients who are nonadherent have less knowledge about the renal diet. Therefore, it is crucial to gather research about the dietary understanding of hemodialysis patients. Insight into the degrees of knowledge could influence the education regimen for hemodialysis patients. Improved treatment ultimately means improved patient outcomes and overall quality of life.

Purpose Statement

The purpose of this study is to determine the difference in knowledge of renal diet and renal medical consequences in adherent and nonadherent adult hemodialysis patients.

Hypothesis

H1: There is a difference in knowledge scores between adherent and nonadherent hemodialysis patient groups.

Operational Definitions

Adherence- Adherence is determined by a three-month average of three laboratory results: serum phosphorus, serum potassium, and interdialytic weight. A patient is considered adherent if all three average lab results are in the appropriate range determined by Centers for Dialysis Care.

Nonadherence- Nonadherence is determined by a three-month average of three laboratory results: serum phosphorus, serum potassium, and interdialytic weight. A patient is considered nonadherent if one or more of the three lab results are not in the appropriate range determined by Centers for Dialysis Care.

Knowledge- The level of comprehension that a patient has about the components of a renal diet including phosphorus, potassium, sodium, fluid, and protein, and the medical complications that result from lack of adherence to a renal diet. Knowledge is measured by a multiple-choice questionnaire testing the factors previously mentioned.

Renal diet- The food choices that hemodialysis patients must make that limits phosphorus, sodium, and fluid in order to prevent waste build-up in the blood (“Living with kidney disease,” n.d.). The renal diet also encourages increased intake of high- quality protein. The renal diet is individualized for every hemodialysis patient. Some patients may need to also limit calcium and potassium (“Living with kidney disease,” n.d.).

Medical consequences- Medical consequences are the result of not properly adhering to an individualized renal diet (“Living with kidney disease,” n.d.). This results

in symptoms that cause pain and further damage to the organs of the body. Important components of a renal diet that require adherence include phosphorus, sodium, fluid, and potassium. Not limiting phosphorus in the diet results in weak bones due to calcium being pulled from them. Too much sodium and fluid intake causes the body to retain water, increasing fluid gains and raising blood pressure. Because potassium plays a role in muscle contraction, too much intake may cause irregular heartbeat (“Living with kidney disease,” n.d.).

CHAPTER II

REVIEW OF LITERATURE

The Kidney

The following section will address the physiology of the kidney including glomerular filtration rate.

Physiology

The kidneys have many important jobs in the human body including pH regulation, elimination of metabolic wastes, and maintaining homeostasis (Gropper,

Smith, & Carr, 2016). The kidneys maintain homeostasis by regulating water and electrolyte balances through osmolarity and urine volume. The nephron is the functional unit of the kidneys with 1.5 million of them in each kidney. Each nephron consists of tubular components that include a capillary network known as the Bowman’s capsule, a proximal convoluted tube, loop of Henle, distal convoluted tube, and collecting duct.

There are also vascular components of the nephron that include the glomerulus, the afferent and efferent arterioles, and peritubular capillaries. The glomerulus is located within Bowman’s capsule and plays a very important role in filtering water and solutes from the blood. Only about 20% of the blood that enters the glomerulus is filtered, with the other 80% flowing through the efferent arterioles to be filtered. The filtered waste from the blood, otherwise known as filtrate, is collected by Bowman’s capsule. From there it travels through the tubular components of the nephron and into the collecting duct. The collecting ducts then send the filtrate to the ureter where it can enter the bladder

and later exit the body as urine (Gropper, Smith, & Carr, 2016). Overall, the kidneys filter 1600 liters of blood per day (20% of cardiac output) and this turns into about 1.5 liters of urine that is excreted in a normal day (Mahan, Escott-Stump, & Raymond, 2012).

The kidney has other important functions and one includes the production of erythropoietin (Mahan, Escott-Stump, & Raymond, 2012). Erythropoietin is a very important hormone produced by the kidneys that plays a role in red blood cell production in the bone marrow. A deficiency in erythropoietin is the main cause of anemia present in

ESRD patients. The other important function of the kidney is regulation of blood pressure. When cells of the glomerulus sense low blood volume, they secrete the enzyme renin. Renin works by converting angiotensinogen to the hormone angiotensin I (“The renin-angiotensin system,” n.d.). Another enzyme known as angiotensin-converting enzyme (ACE) can then convert angiotensin I to the vasoactive peptide angiotensin II.

Angiotensin II controls blood pressure by causing the blood vessels to constrict (“The renin-angiotensin system,” n.d.). This increases blood pressure and causes the release of the hormone aldosterone from the adrenal glands which causes reabsorption of sodium and fluid, ultimately returning blood pressure to a normal range (Mahan, Escott-Stump,

& Raymond, 2012).

Glomerular filtration rate. Glomerular filtration rate (GFR) is a test that considers several factors to check how well the kidneys are functioning (“Glomerular filtration rate,” n.d.). The formula that estimates GFR includes serum creatinine, age, gender, ethnicity, height, and weight. A blood sample is required from the patient.

Ultimately, this test estimates the amount of blood that passes through the glomeruli

every minute. GFR determines what stage of kidney disease an individual is in and these stages will be addressed further in the document. A GFR greater than 90 ml/min/1.73m2 indicates normal kidney function (“Glomerular filtration rate,” n.d.).

There can be factors that affect the accuracy of estimating GFR (“About eGFR,” n.d.). It is important to remember that this is simply an estimate and identifying trends in numerous GFR measurements is more accurate than looking at one reading that may be off. Also, people with amputations, obesity, or severe malnutrition are likely to have an inaccurate GFR reading. It is also assumed that serum creatinine levels are stable (“About eGFR,” n.d.).

Chronic Kidney Disease

Chronic kidney disease (CKD) is a steady decline in renal function (Mahan,

Escott-Stump, & Raymond, 2012). For some individuals, their diagnosis of CKD is stable, lasting many months or years. For others, CKD can progress rapidly to kidney failure. Once the kidney has lost about one-half of its functioning or more, progressive loss of kidney function continues (Mahan, Escott-Stump, & Raymond, 2012). According to CDC’s National Center for Chronic Disease Prevention and Health Promotion, nearly

30 million Americans have Chronic Kidney Disease (2017). Upwards of 96% of individuals with mild CKD and about half of individuals with severe CKD are not aware of it (“National Center for Chronic Disease,” 2017).

Chronic kidney disease causes an irreversible reduction in the number and function of nephrons (Garcin, 2015). As the number of nephrons dwindle, the remaining

ones are left with a larger workload to maintain normal renal function. This hyperfiltration causes changes in the structure of the afferent arterioles and GFR eventually starts to decrease. As GFR continues to decrease, this causes the progression of chronic kidney disease to end-stage renal disease (Garcin, 2015).

Etiology

Most cases of chronic kidney disease are a result of kidney damage from other health problems which can be caused by glomerulonephritis, diabetes, hypertension, autoimmune diseases, and genetic diseases (“Kidney Failure,” n.d.). The following sections will go in detail about these etiologies.

Glomerulonephritis. The glomeruli play the important role of filtering blood in the kidney (“What is glomerulonephritis,” 2017). When these glomeruli become injured, this causes a group of diseases called glomerulonephritis. Glomerulonephritis can be acute or chronic. Acute glomerulonephritis is typically caused by infections or illnesses such as strep throat, lupus, HIV, or hepatitis C. Chronic glomerulonephritis can be hereditary or caused by changes in the immune system (“What is glomerulonephritis,”

2017).

Symptoms of glomerulonephritis may start slowly and are often not recognized at first (“Glomerulonephritis,” n.d.). Common symptoms include brown-colored urine, foamy urine, fatigue, and swelling in the body in areas such as the face, ankles, legs, or stomach. Glomerulonephritis can be temporary with normal function restored or progress to greater kidney problems such as chronic kidney disease (“Glomerulonephritis,” n.d.).

The first part of diagnosing glomerulonephritis may involve urine, blood, or imaging tests. These may help identify if there are foreign substances in the urine such as blood or protein, or waste in the blood. However, a kidney biopsy is always needed to diagnose glomerulonephritis. Treatment of glomerulonephritis depends completely on the cause and may be as simple as a medication, or as complicated as no possible treatment.

Although prevention of glomerulonephritis is not always possible, some prevention strategies include controlling blood pressure and blood sugar, practicing safe sex and drug use, and do not consume over-the-counter pain relievers in excess

(“Glomerulonephritis,” n.d.).

Diabetes Mellitus. Diabetes and hypertension are responsible for more than 50% of ESRD cases (Nasri & Rafieian, 2015). It is estimated that one in three adults with diabetes has chronic kidney disease (Burrows, Hora, Geiss, Gregg, & Albright, 2017).

About 30% of Type 1 diabetes patients and up to 40% of Type 2 diabetes patients will be diagnosed with kidney failure (“Diabetes,” 2017). Diabetes damages the small blood vessels of the body, which entails the blood vessels of the kidneys. Damaged blood vessels in the kidneys causes them to not function properly. Therefore, as blood is not getting cleaned as well, waste materials build up in the blood. This will also cause retention of water and salt in the body. Along with damaged small blood vessels, diabetes also causes nerve damage in the body. This nerve damage may affect the bladder, resulting in difficulties emptying urine (“Diabetes,” 2017). Not only does diabetes cause renal failure, but renal failure increases insulin needs for diabetic patients (Nasri &

Rafieian-Kopaei, 2015). As uremic toxins and parathyroid levels increase with renal

failure, insulin resistance increases in skeletal muscle tissues. Also, as the body tries to correct anemia caused by kidney failure, the erythropoietin also increases insulin sensitivity (Nasri & Rafieian-Kopaei, 2015).

Hypertension. The kidneys are composed of a network of blood vessels that deliver blood throughout the nephrons (“How High Blood Pressure,” n.d.). High blood pressure that isn’t controlled causes these blood vessels to narrow or weaken, which limits blood delivery to the kidney tissue. When the nephrons do not receive the necessary blood flow that contains oxygen and nutrients, the kidneys are no longer able to perform their main function of filtering blood and regulating fluid and hormones.

When the kidneys are no longer able to regulate fluid, extra fluid can build up in the body which can raise blood pressure even more. Also, the kidneys play a role in regulating blood pressure with the hormone aldosterone. As high blood pressure becomes uncontrolled and kidneys become damaged, all abilities to regulate blood pressure fail.

(“How High Blood Pressure,” n.d.).

Polycystic Kidney Disease. Polycystic kidney disease (PKD) is a genetic disorder that causes the growth of cysts within the kidneys (“What is PKD,” n.d.). These fluid-filled cysts continue to grow, causing the kidney to enlarge and lose function

(“Polycystic kidney disease,” 2018). The cysts from PKD can even begin to grow elsewhere in the body such as the liver, causing serious complications. There are two types of PKD: autosomal dominant polycystic kidney disease (ADPKD) and autosomal recessive polycystic kidney disease (ARPKD) (“Polycystic kidney disease,” 2018).

ADPKD is the most common type of PKD, affecting more than 600,000

Americans (“What is PKD,” n.d.) and often developing later in life around 35 years of age (“Polycystic kidney disease,” 2018). If just one parent has this disorder, each child has a fifty percent chance of developing it (“Polycystic kidney disease,” 2018). ADPKD is caused by mutations in the genes PKD1 and PKD2 (“What is PKD,” n.d.). The PKD1 gene mutation accounts for 85% of ADPKD cases and affects the protein polycystin-1.

Mutations in these genes ultimately cause cellular abnormalities that affect the growth and fluid secretion of the kidneys. In the early stages of ADPKD, there are typically no symptoms leaving many to go undiagnosed. The first signs of ADPKD are blood in the urine, high blood pressure, back pain, or urinary tract infection. High blood pressure is prevalent in up to 70% of PKD patients due to the cysts putting pressure of kidney blood vessels. The ways to diagnose ADPKD include ultrasound, CT scan, and MRI. An ultrasound is typically the most common and least costly way to diagnose, especially because CT scans require contrast dye which can be toxic to the kidneys. DNA testing is available for identifying PKD up to a 99 percent probability in individuals with family history (“What is PKD,” n.d.).

ARPKD is a rare form of the disease that affects 1 in every 20,000 children worldwide (“What is PKD,” n.d.). ARPKD is caused by a mutation in chromosome 6.

Because ARPKD is a recessive disorder, this means that the child must inherit a copy of the mutated gene (PKHD1) from both parents. ARPKD can be noticed prenatally by enlarged kidneys on a fetal ultrasound or low amniotic fluid levels. If not found prenatally, symptoms may be noticed directly after birth. Some of these symptoms

include enlarged kidneys, breathing difficulties, excessive urine production, and hypertension. ARPKD causes excessive urine production in children and high blood pressure is very common. If high blood pressure goes untreated, it can lead to kidney failure more quickly. This disorder also affects the liver leading to congenital hepatic fibrosis. Most children with ARPKD will have progressive loss in kidney function and kidney failure is inevitable, although impossible to predict at what age (“What is PKD,” n.d.)

The best treatment for PKD is addressing the signs and symptoms in the early stages (“Polycystic kidney disease,” 2018). One important complication to treat is high blood pressure. By treating high blood pressure with proper diet, exercise, medications, and stress management, this can slow the progression of PKD. Inevitably, some individuals are going to face kidney failure, in which dialysis or kidney transplant are the treatment options (“Polycystic kidney disease,” 2018).

Acute Kidney Injury. Acute kidney injury (AKI), also known as acute renal failure (ARF), is when there is a sudden decreased in glomerular filtration rate and the kidney can no longer get rid of the necessary amount of waste (Mahan, Escott-Stump, &

Raymond, 2012). Acute renal failure can be reversible or develop into chronic kidney disease. The many causes of AKI can be classified by prerenal, intrinsic, or postrenal.

The first causes include severe dehydration and circulatory collapse. The second type of causes intrinsically include tubular necrosis from trauma or surgery, nephrotoxicity from drugs, a reaction to drugs, vascular disorders, and acute glomerulonephritis. The last category of causes from postrenal urinary tract obstruction include carcinoma of the

bladder, pelvic cancer, ureteral stones, and rhabdomyolysis. Recovery and mortality rates depend completely on the cause of the AKI. Some individuals require some form of dialysis to reduce acidosis and control uremia until kidney function returns (Mahan,

Escott-Stump, & Raymond, 2012).

Medical nutrition therapy for AKI is very complicated as there are many issues to address such as electrolyte imbalances, metabolic acidosis, and fluid imbalances (Mahan,

Escott-Stump, & Raymond, 2012). This can be especially difficult for protein needs as there are nitrogenous waste, but the patient might also be dealing with an infection or stress that requires increased protein needs. Although patients have decreased appetite in the beginning stages, immediate nutritional support is crucial for survival, especially in someone who is malnourished (Mahan, Escott-Stump, & Raymond, 2012).

Stages of CKD

Chronic kidney disease (CKD) is categorized into stages that are determined by glomerular filtration rate (GFR) and other factors that show evidence of kidney disease

(Mahan, Escott-Stump, & Raymond, 2012). The stages range from one through five, with stage 1 being the mild, and stage 5 indicating kidney failure (“CKD stages,” n.d.).

Stage 1. Individuals with Stage 1 CKD have a normal GFR >90ml/min/1.73m2, but other factors that show evidence of CKD (“CKD stages,” n.d.). These factors include proteinuria, hematuria, structural abnormalities, a type of genetic kidney disease, or renal tubular disorders (“CKD stages,” n.d.). Stage 1 is rarely discovered as there are usually no symptoms (“Stages of chronic kidney disease,” n.d.). Individuals may find out they

are in stage 1 CKD because they were getting tested for another preexisting condition such as diabetes. If stage 1 CKD is diagnosed, it is important to continually monitor to track whether the condition is progressing. Although there isn’t a need for strict diet restrictions at this point, it is important to start incorporating healthy dietary changes such as limiting processed foods, consuming adequate calories, and consuming less sodium. If an individual has another condition such as high blood pressure or diabetes, it is then very important to monitor dietary intake as these diseases may progress CKD (“Stages of chronic kidney disease,” n.d.).

Stage 2. Stage 2 of CKD is represented by a GFR of 60-90 ml/min/1.73m2 and other evidence of kidney disease including proteinuria, hematuria, structural abnormalities, genetic kidney disease, or renal tubular disorders (“CKD stages,” n.d.).

Similar to stage 1, individuals with stage 2 are typically asymptomatic because the kidneys function well even when they’re not at 100 percent “Stages of Chronic Kidney

Disease,” n.d.). Most people will find out they have stage 2 CKD because they were being tested for other conditions such as diabetes or high blood pressure. Although stage

2 is only mild, it is important to be aware so that the kidney disease does not progress.

This can be accomplished by eating a healthy diet, keeping blood pressure at a normal level, regulating blood sugar, and regularly checking laboratory measures such as GFR.

The healthy diet recommended involves consuming fruits, vegetables and whole grains, and limiting saturated fats, processed foods and sodium. This is not a “strict” renal diet, but it will help the kidneys function and also prevent other diseases such as diabetes and

high blood pressure from worsening and therefore putting more strain on the kidneys

(“Stages of chronic kidney disease,” n.d.).

Stage 3. Stage 3 is categorized into two levels: Stage 3A and Stage 3B (“Stages of chronic kidney disease,” n.d.). Stage 3A is defined by a GFR of 45-59 mL/min. Stage 3B is more advanced and defined by a GFR of 30-44 mL/min. Because kidney function is relatively declined at this point, more waste products build up in the blood. This causes a higher likelihood of complications such as high blood pressure and anemia. Stage 3 is commonly diagnosed as individuals may experience symptoms including fluid retention, fatigue, urinary changes, and back pain (“Stages of chronic kidney disease,” n.d.). Some individuals with stage 3 need further investigation as they might be at risk for faster progression of their renal disease (“CKD stages,” n.d.). Risk factors include proteinuria, hematuria, old age, and family history of renal failure (“CKD stages,’ n.d.). At this stage, individuals may be referred to a dietitian to help them create a renal diet plan that is best for their individualized needs (“Stages of chronic kidney disease,” n.d.). A reduction in protein should be implemented to preserve renal function and should be about 15% of total caloric intake (Mahan, Escott-Stump, & Raymond, 2012). To optimize protein use during this restriction, at least 50% of the protein consumed by patients should be of high biologic value (HBV). Phosphorus is another nutrient that should be restricted (Mahan,

Escott-Stump, & Raymond, 2012). Diet change may also include changes related to other diseases such as diabetes and high blood pressure. So, changes may include cutting back carbohydrates, decreasing saturated fat, and lowering sodium (“Stages of chronic kidney

disease,” n.d.). Other ways to manage stage 3 CKD are to take prescribed medications, exercise regularly, and quit smoking (“Stages of chronic kidney disease,” n.d.).

Stage 4. Stage 4 CKD is reflected by a GFR of 15-29 ml/min/1.73m2 (“CKD stages,” n.d.). At this point, kidney function is significantly impaired (“CKD stages,” n.d.). At stage 4, individuals will experience the complications of kidney disease and it is common that they will need kidney replacement therapy in the near future (“Stages of chronic kidney disease,” n.d.). Because the kidneys are very impaired, the waste product urea builds up in the blood and can be experienced in symptoms such as bad breath and loss of appetite. Other symptoms that may be experienced related to stage 4 CKD include fatigue, fluid retention, restless legs, urination changes, difficulty concentrating, metallic taste in the mouth, and nerve problems (“Stages of chronic kidney disease,” n.d.).

Electrolytes should be regularly monitored at this stage (Garcin, 2015). Similar to stage 3, the diet is very important to prevent faster progression of kidney disease (Mahan, Escott-

Stump, & Raymond, 2012). Protein should be restricted even more in this stage to only about 10% of daily caloric intake and 50% should be HBV. This is because the digestion of protein releases waste products that the damaged kidneys cannot keep up with. Along with protein, phosphorus and sodium should be limited. Typically, less than 1000 mg of phosphorus a day is recommended, and the decrease in protein consumption is usually helpful to decreasing phosphorus. Other nutrients such as potassium may depend on an individual’s lab work (Mahan, Escott-Stump, & Raymond, 2012).

Stage 5. Stage 5 CKD is also referred to as end stage renal disease (ESRD) and this is defined by a GFR of 15 ml/min/1.73m2 or less (“Stages of chronic kidney

disease,” n.d.). At this stage, have lost most or all of their function and renal replacement therapy or a transplant is required. The next section will describe ESRD.

End Stage Renal Disease

The following sections will address the epidemiology, dietary assessment, laboratory assessment, and treatment of end stage renal disease. The comorbidities of patients with end stage renal disease will also be addressed.

Epidemiology

Of the millions of individuals with CKD, over 650,000 individuals suffer from

ESRD (“End Stage Renal Disease,” 2016). Nearly 468,000 of those with ESRD are being treated with dialysis and over 190,000 have received a kidney transplant that is functioning. In the U.S., ESRD is more prevalent in males and occurs most commonly between the ages of 45-64 years (“End stage renal disease,” 2016). African Americans are about three times more likely to develop ESRD compared to Caucasians (“National

Center for Chronic Disease,” 2017). The incidence rate of ESRD has been rising since

2011 (“Chapter 1,” 2018), accumulating 31 billion dollars in Medicare spending per year

(“End stage renal disease,” 2016). In 2015, the ESRD incidence rate was about 124,000 people (“Chapter 1,” 2018). Ultimately, when looking at health-care costs, the burden of

ESRD is continuing to increase in the United States (“Chapter 1,” 2018).

Dietary Assessment

In dialysis patients, there is a strong correlation between nutritional status and mortality (Bross et al., 2010). Overnutrition and malnutrition is very prevalent in this population and dietary assessment is crucial. Many patients need to alter their diet when they reach a diagnosis of CKD or ESRD and therefore dietary assessment is the first step to change (Bross et al., 2010). Registered dietitians (RD) play a very crucial role in assessing the nutritional status of ESRD patients (Thompson, n.d.). The RD must keep in mind the patient’s underlying cause of their ESRD and create a nutrition plan that is individualized and evidence-based (Thompson, n.d.).

Many metabolic disturbances that occur in ESRD can lead to poor appetite and weight loss (Thompson, n.d.). Therefore, it is important to identify nutritional status and identify patients at risk of being malnourished. Subjective global assessments (SGAs) obtain historical and physical data to formulate a score that determines a patient’s risk.

Historical data includes changes in weight or appetite, medical history, and activity level.

The physical data includes a physical assessment of the patient that looks at subcutaneous fat loss, muscle wasting, and edema. After these assessments, a score can be calculated that determines if a patient is nutritionally compromised and needs nutrition education or intervention from a registered dietitian (Thompson, n.d.).

Common methods of dietary assessment include short-term dietary recalls, food records, dietary interviews, and food frequency questionnaires (Bross et al., 2010).

Dietary recalls, most commonly over a 24-hour period, are a quick and convenient way to obtain information. However, dietary recalls may lack accuracy due to patient memory, and might not reflect the extent of the patient’s diet. Food diaries that span up to a week

are an accurate, comprehensive look into a patient’s meal pattern. Food frequency questionnaires can be altered to be brief or extensive and record a large number of food items that a patient commonly consumes. Overall, dietary assessment methods are an important way for registered dietitians to gain insight about every patient’s typical meal pattern. Deciding which method works best is ultimately up to the facility and professionals distributing them (Bross et al., 2010).

Laboratory Assessment

Laboratory assessment consists of blood work, urine samples, or other tests (“Lab values explained,” n.d.). Lab tests are crucial for diagnosing chronic kidney disease, determining kidney function, and assessing waste products in the body (“Lab values explained,” n.d.). When a patient starts hemodialysis, lab tests can help determine how well treatment is working (“Understanding your lab work,” n.d.). Necessary changes can then be made with the dialysis treatment, medication, or diet if needed (“Understanding your lab work,” n.d.).

The first set of laboratory values are crucial to diagnose chronic kidney disease.

Blood urea nitrogen (BUN) measures the amount of urea in the blood (“Blood & urine test,” n.d.). When protein is metabolized in the liver, ammonia is initially produced which is then converted to urea – a less toxic waste product (‘Blood urea nitrogen,” n.d.). The liver disperses urea into the blood which is then filtered by the kidneys. When the kidneys are damaged, this leaves excess urea in the blood and can cause BUN levels to be high (“Blood & urine test,” n.d.). Lack of protein consumption can cause low BUN

levels. The normal BUN level for adults of both genders is 7-20 mg/dL (“Blood & urine test,” n.d.). When the compound creatine gets broken down by the muscles, the waste product creatinine is formed (“Creatinine,” n.d.). The kidneys remove creatinine from the blood, and it gets released from the body through the urine. Serum creatinine is a good indicator of the kidney’s health because almost all the creatinine waste in the body is filtered by the kidneys. Therefore, if serum creatinine is high, this means the kidneys are not functioning properly. Because creatinine is dependent on the muscles, serum creatinine will be higher in men as they have more muscle mass. Serum creatinine is typically ordered with a basic or comprehensive metabolic panel. It can also be useful in other tests such as creatine clearance or urine protein/creatinine ratio (“Creatinine,” n.d.).

The reference range is 0.6-1.1 mg/dL for adult females and 0.7-1.3 mg/dL for adult males

(“Blood & urine test,” n.d.). Creatine clearance differs from serum creatinine in that it not only looks at the amount of creatinine in the blood, but the urine as well (“Creatinine clearance,” n.d.). The sample of urine is used from a 24-hour urine collection. Creatine clearance is calculation of how much creatinine has been cleared from the blood and passed through to the urine (“Creatinine clearance,” n.d.). The reference range for creatinine clearance is 88-128 mL/min for adult women and 97-137 mL/min for adult men (“Blood & urine test,” n.d.).

The next set of blood tests are important for nutritional assessment. Many of these tests can give the dietitian insight on if the patient is adherent to their recommended diet

(“Understanding your lab values,” 2017). Serum albumin is a reflection of the protein level in the blood and is crucial for transportation in the blood (“Lab values explained,”

n.d.). Many individuals on dialysis struggle consuming enough protein and this can reflect in albumin levels. The goal albumin range for CKD patients is 4 g/dL

(“Understanding your lab values,” n.d.). Phosphorus, potassium, sodium, and calcium are important electrolytes in the body that work to transport nutrients in and out of cells

(“Understanding your lab work,” n.d.). These electrolytes are measured via monthly blood tests for hemodialysis patients and goal ranges are 135-145 mEq/L for sodium, 3.5-

5.5 mEq/L for potassium, 3.5-5.5 mg/dL for phosphorus, and 8.4-9.5mg/dL for calcium.

If these values are out of range, a registered dietitian recommends dietary adjustments for improvement (“Understanding your lab values,” n.d.). Interdialytic weight gain is the weight gained between hemodialysis sessions and is a determinate of salt and fluid that was consumed (López-Gómez, Villaverde, Jofre, Rodriguez-Benítez, & Perez-García,

2005). Excess consumption of sodium and fluid can cause volume overload, which is associated with high blood pressure and increased cardiovascular risk. Interdialytic weight percentage is calculated by dividing the interdialytic weight gain by the patient’s calculated dry weight. This percentage becomes concerning when it is greater than 4%

(López-Gómez, Villaverde, Jofre, Rodriguez-Benítez, & Perez-García, 2005).

The last set of laboratory tests are associated with other medical conditions that a patient might have. Blood glucose tests and hemoglobin A1C are required for patients with a diagnosis of diabetes (“Lab values explained,” n.d.). Blood glucose measures the amount of sugar, or glucose, in the blood and is drawn at every session. Fasting glucose is calculated before eating and the target range for diabetics is 70-30 mg/dl. Hemoglobin

A1C measures blood glucose over a time period of three months. The result of this lab

test should be less than 7%. Anemia is another common condition that hemodialysis patients face so the lab tests hematocrit and hemoglobin are measured. Hematocrit measure the size and amount of red blood cells and the goal range for individuals with

CKD is 33-36%. Hemoglobin is the oxygen-transporting part of the red blood cell and the desirable range for CKD patients is 11-12 g/dl (“Lab values explain,” n.d.).

Treatment

Medications. Dialysis cannot solely replace kidney function, and this requires heavy reliance on medications (“7 common drugs,” n.d.). Medications help patients maintain a higher quality of life and longevity (“7 common drugs,” n.d.). Medication adherence is indicated by patients taking their prescribed medications as recommended at the correct dose and frequency (Ndemera & Bhengu, 2019).

Phosphorus binders. Phosphorus binders inhibit the intestinal absorption of phosphorus (Isakova et al., 2009). Phosphorus binders are crucial for many reasons. One important reason is that dialysis is not able to remove all the excess phosphorus in the body. Although a low phosphorus diet is prescribed, this remains difficult to sustain with phosphorus in so many food items. Also, because phosphorus is in so many high-protein foods, patients may face protein malnutrition if restricted too much (Isakova et al., 2009).

Phosphorus binders are often correlated with poor adherence due to a high pill burden of over 50% of the patient’s daily pills because they must be taken with every meal (Chan,

Au, Francis, Mudge, Johnson, & Pillans, 2017).

There are numerous types of phosphorus binders that are individualized for patients’ needs (Chan, Au, Francis, Mudge, Johnson, & Pillans, 2017). The three common forms include calcium-containing, aluminum-containing, and non-calcium- based. Calcium-containing and aluminum-containing binders work by forming insoluble phosphate complexes in the gastrointestinal system. Calcium-containing binders

(typically calcium carbonate) are the most common type used and should be taken with every meal (one tablet per meal). These can be inexpensive and include brands such as

Tums. These are a good option for patients with low calcium levels but are not an option if hypercalcemia is present. Calcium-containing binders also require large doses to be effective and may cause vascular calcification. Aluminum-containing binders are recommended for non-dialysis CKD patients and are inexpensive. However, they can have adverse side effects and serum aluminum must be monitored. The dosage is typically one tablet three times a day with meals. Non-calcium-based binders are the newer option of the three and include sevelamer and lanthanum. These are a common option for dialysis patients, and they work by an anion exchange resin or by forming insoluble phosphate complexes in the gastrointestinal system. The pill burden can also be high with non-calcium-based binders with pills needing to be taken with every meal. The disadvantages of these phosphorus binders are the high expense and unfortunate gastrointestinal symptoms they might cause (Chan, Au, Francis, Mudge, Johnson, &

Pillans, 2017).

Erythropoietin. Nearly all patients on dialysis have a low red blood cell count otherwise known as anemia (“7 common drugs,” n.d.). This is because the kidneys are

responsible for secreting the hormone erythropoietin which normalizes red blood cell count in the body. This requires hemodialysis patients to receive an injection of erythropoietin intravenously during every treatment. Iron supplementation is also required for erythropoietin to work properly. Therefore, most dialysis patients also need to receive iron either orally or intravenously (“7 common drugs,” n.d.).

Active vitamin D. Circulating calcitriol concentrations in the body start to reduce with a progressive loss in kidney function (“Vitamin D metabolism,” n.d.). As this decline in calcitriol is happening, serum PTH concentrations progressively increase.

Calcitriol plays a crucial role of assisting in regulation of calcium and phosphorus in the body. Vitamin D supplementation is used to slow the progression of secondary hyperparathyroidism. This is important as secondary hyperparathyroidism in dialysis patients is associated with vascular calcification and bone disease. Vitamin D treatment is used with vitamin D2 or vitamin D3. Serum 25-hydroxy vitamin D levels are a good indicator of how much vitamin D should be supplemented. Ultimately, vitamin D therapy is used to prevent further progression of secondary hyperparathyroidism and improve health outcomes (“Vitamin D metabolism,” n.d.).

Dialysis. The ideal treatment choice for ESRD patients is a kidney transplant, but this is not usually an option (Hailey & Moss, 2000). Therefore, dialysis is the primary form of initial treatment for most ESRD patients. Dialysis cleans the blood through the use of a machine that works as an artificial kidney or with utilization of the body’s own peritoneum (Hailey & Moss, 2000). Up to 500,000 ESRD patients are undergoing dialysis in the United States (“End stage renal disease,” 2016).

Kt/V. Kt/V is a formula used to measure the accuracy of each dialysis treatment

(Mahan, Escott-Stump, & Raymond, 2012). In the formula, “K” represents the clearance of urea by the dialyzer, “t” represents the length of time of dialysis, and “V” represents the patient’s total body water. This number should be higher than 1.4 per hemodialysis session (Mahan, Escott-Stump, & Raymond, 2012). This formula was created for two important reasons (Daugirdas, 2014). The first reason was because it was a measure that was independent of dialysis frequency. The second reason was because the number would be similar for both hemodialysis and peritoneal dialysis (Daugirdas, 2014).

Hemodialysis. Hemodialysis is the most common form of dialysis in the United

States (Hailey & Moss, 2000). Hemodialysis removes waste and water from the blood through a semipermeable membrane with the use of a dialyzing machine. Although it can be done at home, in-center dialysis is more common, and involves a patient’s participation three days per week for about four hours per session (Hailey & Moss, 2000).

Session time is dependent on many factors including kidney function, interdialytic weight gain, and body size (“What is dialysis,” 2018). For blood to leave the body, an access needs to be made into the patient’s blood vessels in the form of a fistula, graft, or catheter

(“What is dialysis,” 2018).

One important aspect of hemodialysis treatment is to determine a patient’s appropriate dry weight so that treatment parameters can aim to achieve this weight

(Crown, Vogel, & Hurlock-Chorostecki, 2017). Dry weight is a patient’s normal weight without any extra fluid (“What is dry weight,” 2017). When too much fluid builds up in the body, it can put strain on the heart and lungs. Also, if too much fluid builds up,

dialysis is not able to remove it due to cramping, dizziness, or nausea that can occur when fluid is removed too quickly or in excess. This is why it is so important for a patient to be aware of their sodium and fluid intake (“What is dry weight,” 2017).

Peritoneal Dialysis. Peritoneal dialysis (PD) can be a cost-effective and successful alternative to hemodialysis (Büchel et al., 2015). PD uses the lining of the abdomen, also known as the peritoneum, to remove excess water and waste while also correcting electrolyte and acid-base balance (Sow et al., 2018). The peritoneum is essentially the filter that is used while dialysate absorbs the waste from the blood

(“Peritoneal dialysis,” 2018). The mechanism of PD involves the abdomen to be filled with dialysate, followed by a waiting period for it to work. Dialysate contains dextrose, which pulls fluid and waste from the blood through peritoneum, and into the dialysate fluid in the abdomen. After the waste has built up, the dialysate is drained out of the abdomen and refilled with fresh dialysate. One cycle of this process is called an exchange. PD must be completed every day or night, and usually takes place in a patient’s home, or any place that is sanitary (“Peritoneal dialysis,” 2018).

One benefit of PD is the convenience of it, as it does not have to be completed in a dialysis center (“Peritoneal dialysis,” 2018). This provides more freedom to patients who do not want to worry about a scheduled dialysis appointment three days a week.

However, PD is limited on long-term success with nearly 50% of patients needing to switch to hemodialysis within about five years of treatment (Büchel et al., 2015). This is due to changes that occur in the peritoneal tissue after recurrent use and ultimately leads to failures in ultrafiltration. These “non-physiological” fluids that are used in PD can lead

to sub-mesothelial fibrosis, vasculopathy, and loss of the mesothelial cell layer (Büchel et al., 2015).

Kidney Transplantation. Due to the demands of dialysis, kidney transplantation is commonly the treatment of choice for patients who reach ESRD (“Kidney transplant,”

2018). A kidney transplant is a surgical procedure that takes a kidney from a living or nonliving donor and places it in the body of a person who has little to no kidney function.

Kidney transplantation may occur before or after an individual has started dialysis.

Unfortunately, kidney transplantation is riskier than dialysis if an individual has advanced age, dementia, addiction to drugs or alcohol, or severe heart disease. If an individual is appropriate for a kidney transplant, the risks involved are mostly related to the surgery itself, such as infection, rejection of the kidney, and blood clots. (“Kidney Transplant,”

2018). Due to the high demand of kidney transplants, the kidney transplant waiting list is extremely long and the median wait time is around 4 years (“Chapter 6,” 2018). Waiting times range drastically by region, with some states having less than a two-year waiting period, and other states reaching up to a five-year waiting period. Fortunately, the probabilities of graft survival have been improving for the last 20 years. Compared to a lifetime of dialysis, a successful kidney transplant results in improved quality of life, reduced health care costs, decreased risk of early death, and fewer dietary restrictions

(“Chapter 6,” 2018). Ultimately, kidney transplantation is a treatment – not a cure.

Kidney disease may still return, or the body may reject the new kidney (“Kidney

Transplant,” 2018).

Medical Nutrition Therapy. The goal of medical nutrition therapy for patients with ESRD, specifically on dialysis, is to prevent protein-calorie malnutrition and disruptions in electrolytes (Kelly, Rossi, Johnson, & Campbell, 2017). Some important nutrients that must be monitored in the diet include phosphorus, potassium, and sodium

(Nutrition and Hemodialysis, 2013). To prevent-protein calorie malnutrition, it is crucial to consume an adequate number of calories and protein (Nutrition and Hemodialysis,

2013).

Following nutrition assessment, medical nutrition therapy should be initiated if there is a concern in a patient’s nutrition status (Thompson, n.d.). This concern may have been indicated from the SGA, food recall, or laboratory results. The registered dietitian will start by calculating the individualized nutrient needs which include calorie, protein, and electrolyte (Thompson, n.d.).

Energy. Energy needs for ESRD patients should be determined by current dry weight, weight goals, age, gender, physical activity level, and metabolic stressors

(Thompson, n.d.). It is important to use dry weight because this is a patient’s weight that does not have edema or ascites. For individuals younger that 60 years of age, energy needs are based on 35 kilocalories per kilogram of (dry) weight. These energy needs are high as malnutrition is very prevalent in the ESRD population. Energy needs are changed to a range of 30-35 kilocalories per kilogram for individuals over the age of 60. This calculation can range from 23-50 kilocalories per kilogram if either promoting weight loss or weight gain (Thompson, n.d.).

Protein. Although protein needs to be restricted with CKD, once a patient starts dialysis, the body protein is drained easily (Mahan, Escott-Stump, & Raymond, 2012).

Protein must be increased to at least 1.2 g/mg/day and 50% should be high biological value such as poultry, fish, and eggs (Mahan, Escott-Stump, & Raymond, 2012). Protein comes from both plant and animal sources and includes chicken, beef, eggs, fish, quinoa, and soybeans (Thompson, n.d.). However, patients may find it very challenging to consume the recommended amount of protein (Mahan, Escott-Stump, & Raymond,

2012). Many protein-rich foods such as dairy, nuts, and beans are also high in phosphorus. This can be problematic as most patients are on a phosphorus restriction

(Mahan, Escott-Stump, & Raymond, 2012). Even with the addition of phosphorus binding medication, phosphorus is found in so many foods that dietary management is crucial (Nutrition and Hemodialysis, 2013). Another challenge is that uremia can cause changes in taste and aversions to red meat making alternate sources of protein such as poultry, eggs, and tofu better tolerated (Mahan, Escott-Stump, & Raymond, 2012).

Phosphorus. Phosphorus control is an important factor in the prevention of metabolic bone disease (Thompson, n.d.). Many foods are rich in organic and inorganic forms of phosphate, making it complicated for individuals to limit it in dietary intake

(Duff & Chawke, 2017). Naturally, phosphate is found in dairy products, eggs, meat, fish, etc. Inorganic phosphate is a common additive for processed foods and sodas (Shutto et al., 2013) due to its ability to maintain natural flavor, buffer acidity, and hold texture

(Duff & Chawke, 2017). Also, inorganic phosphate can more easily break apart in the gut, allowing 90% of it to be absorbed in the intestinal tract so it is important for these

items to be avoided as much as possible (Duff & Chawke, 2017). Dietary restriction is the first choice for phosphorus control (Thompson, n.d.). However, most patients also need phosphorus binders to remove excess phosphorus from the body (Thompson, n.d.).

Potassium. Potassium is important to control in hemodialysis because low or high levels can lead to heart arrythmias and muscle cramps (Thompson, n.d.). Potassium levels can be increased from the diet, antihypertensive medications, and poor glycemic control. When blood sugar is high, potassium is pulled out of the cells and into the bloodstream due to the high osmolarity of sugar (Thompson, n.d.). Potassium is found highest in potatoes, tomatoes, oranges, bananas, milk products, dried beans and peas, many salt substitutes, and meats (Nutrition and Hemodialysis, 2013). Patients should be advised to avoid these items as much as possible (Thompson, n.d.). Because the potato is a staple in many Americans’ diets, soaking them for at least 30 minutes in a large volume of water is a way that can reduce the potassium content significantly (Thompson, n.d.).

Along with diet, serum potassium is included in dialysate and this can be modified depending on the patient’s serum levels (Karaboyas et al., 2017).

Sodium. Due to the high consumption of processed and convenience foods, sodium is a nutrient that is abundant in the American diet and is found in sauces, seasonings, soups, processed meats, canned and frozen foods, restaurant foods, and snack foods (Nutrition and Hemodialysis, 2013). Sodium is an important component to a renal diet because it is associated with fluid gains and increased thirst (Nutrition and

Hemodialysis, 2013). Many factors go into adjusting the recommended amount of sodium including blood pressure, medications, hydration status, glycemic control, and

gastrointestinal complications including vomiting and diarrhea (Thompson, n.d.)

Typically, sodium recommendations for dialysis patients range from 750-1,000 mg/day

(Thompson, n.d.).

Fluid. Fluid is considered anything liquid at room temperature such as beverages, frozen desserts, gelatin, and soups (Nutrition and Hemodialysis, 2013). Because the kidneys are responsible for water homeostasis, patients with CKD can easily overconsume or under consume fluids becoming edematous or dehydrated (Thompson, n.d.). This is why calculating dry weight is so important because it gives an estimate to how much fluid a patient has accumulated in between dialysis sessions. It is important for registered dietitians to educate patients on the surprising amounts of fluid that many food items contain such as certain fruits and vegetables (Thompson, n.d.).

Vitamin D. The kidney plays a crucial role in converting vitamin D into its active form that can be used by the body (“Vitamin D and chronic kidney disease,” n.d.). When converted to its active form, vitamin D assists in balancing calcium and phosphorus in the body. Activated vitamin D suppresses PTH production, which is important in preventing bone metabolism. It is important that vitamin D regulated PTH because it will commonly try to overcompensate to control calcium levels in the blood resulting in weak bones

(“Vitamin D and chronic kidney disease,” n.d.).

Calcium. Calcium is the most abundant mineral in the body and plays a crucial role in bone development, muscle contraction, blood clotting, and regulation of cell functions (“Calcium and chronic kidney disease,” n.d.). Calcium can be found naturally

in dairy products, spinach, rhubarb, and seafood. Active vitamin D is crucial in helping the body absorb calcium from the intestines. Parathyroid hormone (PTH) also plays a role in how much calcium is absorbed and eliminated in the body (“Calcium and chronic kidney disease,” n.d.).

When active vitamin D is low in the body due to kidney failure, calcium is poorly absorbed in the gastrointestinal tract (Mahan, Escott-Stump, & Raymond, 2012). Also, as phosphate levels increase in the body, the need for calcium increases in the body. These two factors cause the parathyroid gland to oversecrete PTH which increases resorption of bone to provide calcium to the body. This increased osteoclast activity which releases calcium from the bones and ultimately leads to bone demineralization or metabolic bone diseases (Mahan, Escott-Stump, & Raymond, 2012). Not only does this affect the bones, but when excess calcium is in the blood, it can deposit in soft tissue (“Vitamin D and chronic kidney disease,” n.d.). This calcification is permanent and can affect important organs such as the heart and lungs (“Vitamin D and chronic kidney disease.” n.d.).

It is crucial for patients to keep their calcium and phosphorus levels under control to prevent imbalances in the body (“Calcium and chronic kidney disease,” n.d.). If phosphorus levels are high and calcium levels are low, a calcium-based phosphorus binder is typically prescribed. Because the dairy foods that contain calcium also contain high levels of phosphorus, it is crucial for patients to seek out other food sources of calcium or take a calcium supplement (“Calcium and chronic kidney disease,” n.d.).

Comorbidities of ESRD patients

A comorbidity is simply when two or more diseases are occurring in an individual at the same time (Dasari, Venkateshwarlu, & Venisetty, 2014). The following subheadings will address the comorbidities of ESRD that include diabetes, cardiovascular disease, and malnutrition.

Diabetes. As more than 40% of ESRD diagnoses are due to diabetes (Burrows,

Hora, Geiss, Gregg, & Albright, 2017), this makes it an extremely prevalent comorbidity.

As explained prior, insulin resistance is increased due to the build-up of uremic toxins and increases parathyroid hormone levels (Nasri & Rafieian-Kopaei, 2015). Diabetes is also a well-known risk factor for cardiovascular disease because it increases atherosclerosis (Dasari, Venkateshwarlu, & Venisetty, 2014). With increased atherosclerosis, hypertension is caused, and this reduces kidney function. This is why patients are commonly faced with a triple diagnosis of diabetes, cardiovascular disease, and chronic kidney failure (Dasari, Venkateshwarlu, & Venisetty, 2014).

Cardiovascular Disease. The leading cause of morbidity and mortality in hemodialysis patients is cardiovascular disease (CVD) (Barnett, Li Yoong, Pinikahana, &

Si-Yen, 2008). Risk factors for CVD in the general population include hypertension, smoking, age, diabetes mellitus, and hyperlipidemia. Unfortunately, hypertension is fairly universal in ESRD, and hemodialysis patients often suffer with left ventricular enlargement, cardiomyopathy, and cardiac failure (Barnett, Li Yoong, Pinikahana, & Si-

Yen, 2008). CKD increases the risk of CVD, especially if risk factors of obesity, abnormal lipid levels, and/or diabetes are present (Dasari, Venkateshwarlu, & Venisetty,

2014). Two features of a renal diet – sodium and fluid – contribute to high interdialytic

weight gain which has a large effect on cardiovascular health (Barnett, Li Yoong,

Pinikahana, & Si-Yen, 2008).

Malnutrition. Malnutrition is estimated to be present in 40% of the ESRD population (Hernández Morante, Sánchez-Villazala, Cutillas, & Fuentes, 2014), and up to

75% of individuals on hemodialysis (Beer, Mountford, and Boundville, 2018). ESRD patients are at a higher risk of malnutrition due to high nutrient losses from dialysis and therefore higher requirements (Hernández Morante et al., 2014). At a physiological level, malnutrition is also increased with ESRD due to high inflammatory cytokine production, blood loss, and consequences of uremic syndrome such as reduced intake/appetite

(Hernández Morante et al., 2014). This uremic state starts the process of muscle breakdown, which can be masked by fluid retention (Oquendo, Asencio, & de las Nieves,

2017). This displays the importance of looking beyond weight loss to identify malnutrition, as this is not always an indicator.

The presence of protein-energy malnutrition can be detrimental to hemodialysis patients due to increased risk of mortality, lower quality of life, and increased risk of hospitalization (Beer, Mountford, & Boundville, 2018). Unfortunately, studies have shown that a diet low in calories and protein, and high in saturated fat is common for the hemodialysis population, contributing to protein-energy malnutrition. The patient’s eating habits are ultimately the contributing factor when it comes to malnutrition and dietary intervention is crucial (Beer, Mountford, & Boundville, 2018).

Infection Concerns of ESRD Patients

The artery-vein fistula (AVF) should be the first choice of vascular access in hemodialysis as it has the longest survival rate and least complication frequency

(Knežević et al., 2018). However, in times when urgent hemodialysis is needed or all other vascular accesses have been exhausted, central venous catheters (CVC) or other types of catheters are used (Knežević et al., 2018).

Infections are a direct risk factor for increased mortality due to the infectious disease process (Malhotra, Beniwal, & Pursnani, 2012). Infections, along with cardiovascular disease, account for 70% of deaths in the ESRD patient population

(Malhotra, Beniwal, & Pursnani, 2012). Although cardiovascular events are the first cause of death for hemodialysis patients, and death risk from cardiovascular events increases significantly after a hospitalization from infection (Eleftheriadis, Liakopoulos,

Leivaditis, Antoniadi, & Stefanidis, 2011). Infections in hemodialysis patients differ between access related and non-access related (Malhotra, Beniwal, & Pursnani, 2012).

Due to the direct access to the bloodstream, hemodialysis patients have a high risk of developing a severe bloodstream infection resulting in hospitalization. Bacteremia accounts for the majority of severe infections of this population (Eleftheriadis,

Liakopoulos, Leivaditis, Antoniadi, & Stefanidis, 2011), with the most common microorganism causing infection being Staphylococcus aureus (Malhotra, Beniwal, &

Pursnani, 2012).

The annual mortality of hemodialysis patients from bacteremia is 100-300 times higher than the general population (Eleftheriadis, Liakopoulos, Leivaditis, Antoniadi, &

Stefanidis, 2011). Bacteremia infections are most commonly associated with access

related infections, especially related to central venous catheters (CVC). The risk of infection for CVC is about 10 times higher compared to other access sites, such as arteriovenous (AV) fistula (Eleftheriadis, Liakopoulos, Leivaditis, Antoniadi, &

Stefanidis, 2011). In a study conducted by Allon et al., catheters represented only 7.6% of the accesses of hemodialysis patients but contributed to 32% of all access-related infections (2003).

Relevant non-access related infections in hemodialysis patients include gastrointestinal infections (Clostridium difficile, hepatitis), respiratory tract infections, cellulitis, central nervous system infections, HIV, and tuberculosis (Malhotra, Beniwal, &

Pursnani, 2012). Pneumonia is a significant cause of hospitalizations for those with

ESRD and is the second highest behind bacteremia. In fact, those with ESRD are five times more likely to get pneumonia compared to those with normal kidney function.

Cellulitis is also frequently found in diabetic dialysis patients that suffer from neurologic and peripheral vascular disease (Malhotra, Beniwal, & Pursnani, 2012).

Factors Affecting Nonadherence in Hemodialysis Patients

The term adherence can be defined as “the degree to which patient behaviors coincide with the recommendations of health care providers” (Lambert, Mullan, &

Mansfield, 2017). There are many factors related to adherence that have been researched which include social, psychological, self-efficacy, and education and they are further explored in the following sections.

Psychological Factors

ESRD and the treatment process of hemodialysis can cause patients to experience depression, sometimes leading to suicide and early death (Ahrari, Moshki, & Bahrami,

2014). In fact, depression is one of the most common psychiatric disorders in this patient population with up to a 70% prevalence (Ravaghi et al., 2017). Depression in hemodialysis patients can arise from stress, medication side effects, limitations of daily activities, dietary constraints, and worsening economic conditions. When depression is present, this increases the risk of mortality, hospitalizations, decreased appetite, fatigue, weight changes, sexual dysfunction, gastrointestinal problems, decreased participation in social events, and reduced quality of life (Ravaghi et al., 2017). Taskapan et al. found that interdialytic weight was significantly higher in patients with depression and concluded that depression can influence compliance and patient perceptions (2005). It has also been found that hemodialysis patients with depression have higher interdialytic weight gain

(Clark, Farrington, & Chilcot, 2014).

In a study conducted by the American Kidney Fund, a survey was developed to identify factors that contribute to nonadherence in dialysis patients (2018). As a result, depression was one of the highest contributing factors to nonadherence. Approximately

42% of the participants indicated that feelings of depression, anxiety, or fear kept them from activities related to adherence. These activities include skipping dialysis sessions, not taking medications, and overconsumption of fluids. Also, the highest rates of depression were observed in the youngest age group of 18-39 year-olds (American

Kidney Fund, 2018).

Many established hemodialysis patients have a coping behavior that involves their adherence to their dietary/fluid restrictions (Clark, Farrington, & Chilcot, 2014). This involves the patients knowing what they can “get away with” in regard to these restrictions and this can actually have a psychological benefit due to increased perceptions of control. Ultimately, it can even boost self-esteem in the patient (Clark,

Farrington, & Chilcot, 2014).

Social Factors

Lack of social support has been found to be a variable associated with noncompliance (Clark, Farrington, & Chilcot, 2014). Social support is a multidimensional factor as it can involve family’s emotional and physical support, professional help, and community group support (Ahrari, Moshki, & Bahrami, 2014). Whether it is family, significant others, colleagues, or friends, any source of social support has been positively correlated to better health outcomes for chronic disease patients (Ahrari, Moshki, &

Bahrami, 2014). When patients have social support, they have a positive perception of their illness, more satisfaction with their life, and overall improvement of their health

(Gerogianni et al., 2016).

In the survey that was distributed to dialysis patients by the American Kidney

Fund, participants were asked to identify reasons that they did not follow a prescribed diet (2018). Many of the reasons identified were related to social factors. Approximately

40% of the participants identified difficulties adhering when they were dining out.

Another portion of the participants found that the cost of the recommended foods was too

high. Also, for patients that share a living space, friends and family disliking the recommended diet was another barrier for diet adherence. Last, this survey identified that support from family and friends increase adherence to dietary recommendations due to increased help and accountability (American Kidney Fund, 2018).

Family support is an extremely important factor of social support because they can assist in food preparation, medication management, and dietary control (Oquendo,

Asencio, & de las Nieves, 2017). In most situations, a patient’s family has an interest in their medical needs and they will help them adopt changes (Oquendo, Asencio, & de las

Nieves, 2017). In a study by Oh, Park, and Seo, family support had a significant influence on the relationship between depression and self-efficacy in hemodialysis patients (2013).

A specific factor of family support is marriage, and this has been shown to raise self- esteem and confidence (Gerogianni et al., 2016). Having a marital relationship increases overall social relationships, giving patients more satisfaction with their lives at home and work. This can make up for social relationships that patients might have to leave at the start of hemodialysis (Gerogianni et al., 2016).

One large stressor that affects hemodialysis patients is unemployment

(Gerogianni et al., 2016). Employment might not be possible because of the high time demand of dialysis treatments, poor physical and emotional health, and symptoms such as fatigue. This potentially eliminates a large amount of social relationships that patients interact with on a daily basis. This requires patients to modify their professional activities, find new social relationships, and possibly find new ways to accumulate

income. Hemodialysis patients may ultimately feel as though they are just observers and not actors in their own life (Gerogianni et al., 2016).

Education Factors

Patient education has shown improved outcomes in common chronic diseases such as diabetes mellitus and with time, research is cumulating related to ESRD

(Cavanaugh, Wingard, Hakim, Elasy, & Ikizer, 2009). A complete understanding of hemodialysis is crucial for patients to fully adhere to recommendations and therefore lower the risks of hospitalization and death (Miyata et al., 2018). Therefore, patient outcomes can be positively affected by increased knowledge of ESRD (Alikari, Matziou,

Tsironi, Theofilou, & Zyga, 2015), and different results of various education techniques will be highlighted as follows.

Many studies have sought to find the best approach to nutrition education that will ensure better dietary management in hemodialysis patients (Rizk, Karavetian,

Hiligsmann, & Evers, 2017). There are many ways to provide nutrition education such as incorporating behavioral and cognitive components. A study by Rizk, Karavetian,

Hiligsmann, and Evers used the theoretical model of behavior change to implement nutrition education about serum phosphorus (2017). Renal-trained dietitians provided 2 hours of nutrition education per month to the experimental group of patients while also tracking each patient’s stage of behavioral change about a low-phosphorus diet. The control group of patients received the usual nutrition care from hospital dietitians who did not use a behavior change method. As a result, patients in the experimental group had

significant improvements in readiness to adhere to a low phosphorus diet and phosphorus laboratory results. This shows that behavior change methods of nutrition education can be useful. Another factor was the formal renal nutrition education that the dietitians received, showing that the expertise of the teacher is also important (Rizk, Karavetian,

Hiligsmann, & Evers, 2017).

Phosphorus dietary education studies are abundant due to the importance of combating hyperphosphatemia (Tsai et al., 2016). Also, studies suggest that a phosphorus dietary restriction is less adhered to than other nutrients such as potassium and sodium

(Duff & Chawke, 2017; Durose, Holdsworth, Watson, & Przygrodzka, 2004). It is crucial that patients are knowledgeable about foods that contain high-phosphorus and education by staff at the dialysis center, specifically dietitians, is very important (Caldiera, Amaral,

David, & Sampaio, 2011). In a Meta-analysis conducted by Caldeira and colleagues, it was found that educational strategies were useful to reduce serum phosphorus in dialysis patients (2011). In 50% of the studies, target phosphorus levels were reached in the intervention groups, and none of the control groups were able to reach these levels

(Caldiera, Amaral, David, & Sampaio, 2011). In a randomized control trial by Sullivan et al., ESRD patients received education on foods containing phosphorus additives (2009).

As a result, the intervention group had significantly lower serum phosphorus levels (0.6 mg/dL decrease) compared to the control group after three months, showing that education on phosphorus-containing food additives can be beneficial (Sullivan et al.,

2009). In another study related to phosphate additives, Duff and Chawke conducted an education program that sought to teach hemodialysis patients about phosphate additives

and the complications of hyperphosphatemia (2017). As a result, the serum phosphorus laboratory results of the 36 patients enrolled in the study decreased significantly over the course of three months (Duff & Chawke, 2017).

Some studies have found that nutrition knowledge related to hemodialysis does not influence patient compliance. Miyata et al. discovered that hemodialysis-related knowledge scores did not differ in the two patient groups of non-adherent and adherent

(2018). It was therefore predicted that socioeconomic factors may play a larger role

(Miyata et al., 2018). When assessing the prevalence of dietary noncompliance on hemodialysis patients, a study by Durose, Holdsworth, Watson, and Przygrodzka found that a knowledge of dietary restrictions and medical consequences of noncompliance were not related to dietary compliance (2004). Although dietary knowledge is an extremely important factor for hemodialysis patients, nutrition education alone is not going to improve dietary compliance. This ultimately highlights that there are many factors other than education that relate to patient noncompliance.

Another knowledge aspect related to noncompliance is miscommunication between patient and caregiver. Miyata et al. initially found that there is a divide between what physicians expect dialysis patients to know, and what patients actually know (2018).

Also, because the renal diet is such a large part of a patient’s plan of care, there may conflicting dietary advice given to a patient by different health professionals (Lambert,

Mullan, & Mansfield, 2017).

Self-efficacy

Self-efficacy related to disease can be summarized to “finding the limit at which the patients can achieve their desired outcomes” (Mousa, Ataba, Al-ali, Alkaiyat, &

Zyoud, 2018). Self-efficacy is commonly referred to in the health field because it is a positive influencer of health behavior change (Kauric-Klein, Peters, & Yarandi, 2017).

Health outcomes of ESRD can be positive if patients are able to self-manage this disease.

Self-managing a chronic disease like ESRD is only possible with disease-related self- efficacy, which incorporates carrying out treatment recommendations throughout the daily life. Increasing self-efficacy can also improve self-care which improves over quality of life and medication-adherence (Mousa, Ataba, Al-ali, Alkaiyat, & Zyoud, 2018).

With this information in mind, Mousa and colleagues sought to conduct a cross- sectional study to describe the relationship between the self-efficacy of hemodialysis patients and their quality of life (2018). As a result, it was concluded that lower levels of quality of life were associated with lower levels of self-efficacy. It was also found that age, high monthly income, and living alone all have a positive relationship with self- efficacy (Mousa, Ataba, Al-ali, Alkaiyat, & Zyoud, 2018).

A study by Christensen, Moran, Wiebe, Ehlers, and Lawton used the self- regulation theory to increase adherence to fluid restrictions in hemodialysis patients

(2002). The self-regulation theory includes the central regulatory processes of self- monitoring, self-evaluation, and self-reinforcement to achieve success of new behaviors.

Adherence to fluid restrictions were monitored with interdialytic weight gain. Ultimately, they found that incorporation of self-efficacy components related to fluid intake in

weekly group meetings over the course of seven weeks decreased interdialytic weight gain (Christensen, Moran, Wiebe, Ehlers, & Lawton, 2002).

CHAPTER III

METHODOLOGY

Overview

The purpose of this study was to determine if adherence contributes to knowledge of a renal diet and the medical consequences of nonadherence in adult hemodialysis patients. Data collection was performed with a paper questionnaire that was distributed during a single hemodialysis session. The questionnaire contained questions relating to knowledge of a renal diet and the medical consequences that are associated with nonadherence of a renal diet. The independent variables of this study were knowledge of a renal diet and knowledge of medical consequences. The dependent variable was compliance.

Participants

The sample consisted of adult hemodialysis patients at a Centers for Dialysis Care

(CDC) in Northeast Ohio. Participants had a diagnosis of end stage renal disease (ESRD) and were at least 18 years of age. Acute renal failure patients were not included as most do not have the same dialysis and dietary demands. Participants were of any gender, ethnicity, and living situation. The sample was restricted to one dialysis location and included all sessions of the Monday-Wednesday-Friday and Tuesday-Thursday-Saturday schedule.

47 48

Laboratory Results

An assessment of laboratory results was required to determine whether each patient was considered adherent or nonadherent. This was determined by the three laboratory measures of serum phosphorus, serum potassium, and percentage of interdialytic weight gain. An average of each determinate was taken from the months of

December 2018, January 2019, and February 2019. Patients were deemed adherent to their renal diets if all three laboratory averages were within the range that is determined by CDC standards (Appendix A). Nonadherence was deemed if one or more of the three laboratory averages were out of range.

Instrumentation

Data was collected with the use of a paper questionnaire (Appendix B) that contained nutrition knowledge, medical symptom knowledge, demographic, and health- related questions. After review of laboratory data, each patient was assigned a number to keep their information anonymous. After questionnaires were collected, patient names were deleted from all research records. This data collection was approved by Kent State

University Institutional Review Board and the dialysis center.

Questionnaire Development

The layout of the questionnaire was created with the help of a former questionnaire from Durose, Holdsworth, Watson, and Przygrodzka (Appendix C) that sought to determine if dietary compliance in hemodialysis patients is influenced by knowledge of the diet and medical consequences of noncompliance. This study was

conducted at Nottingham City Hospital in Nottingham, United Kingdom. The questionnaire contains demographics, restricted food knowledge (potassium, phosphorus, sodium, and fluid), knowledge of medical complications of dietary noncompliance, and questions regarding nutrition counseling that the patients experienced. The questionnaire was edited to fit the purpose of this study. The questionnaire used for this study was adjusted with food choices that are common in the United States. The questionnaire was also adjusted to be multiple choice and only have one correct answer per question.

Questions related to counseling were omitted, as patients in this study did not have any specific nutrition counseling for this research. Permission was granted by the authors of the original study.

Questionnaire Components

The final questionnaire (Appendix B) contained 26 total questions that related to renal diet knowledge, knowledge of medical symptoms related to dietary adherence, demographic information, and health information. Demographic and health information was the last part of the questionnaire to avoid survey fatigue. Other than two demographic questions, the questionnaire was multiple choice.

Part I: Knowledge of renal nutrition and medical symptoms of nonadherence. Part I of the questionnaire included five questions that tested the participants on common nutrients in a renal diet. The nutrients included phosphorus, potassium, sodium, fluid, and protein. Participants were asked to choose a single food item with the lowest amount of the suggested nutrient.

Part II: Medical symptom and miscellaneous questions. The following series of questions were related to the potential side effects of not adhering to a renal diet.

Questions asked what side effect correlated to high consumption of phosphorus, potassium, sodium, and fluid. Last, there were miscellaneous questions involving salt substitutes, phosphorus binders, and albumin.

Part III: Demographics and health information. Part III of the questionnaire included 12 total questions relating to the demographics and health information of the participants. The first questions were general demographic questions regarding gender, age, ethnicity, education, and work status. The next questions were self-reported health information asking the participants if they have been diagnosed with diabetes and/or high blood pressure, are taking a phosphorus binder, and have been recommended a fluid restriction. The participants were asked to write in the length of time they had been on dialysis. The next question involved a Likert-scale ranging from “strongly agree” to

“strongly disagree” and asked the participants if they feel that they are successful with their renal diet. Last, the participants were asked if they have ever received dietary advice from a dietitian.

Data Collection Procedures

After IRB approval, the participants were selected through a convenience sample at a Centers for Dialysis Care in Northeast Ohio. Before participation in the questionnaire, the participants were required to read and sign a letter of consent

(Appendix D) and HIPAA authorization form (Appendix E) that were both distributed by

the researcher. Participants were given a copy of both forms. After agreeing to participate in the study and signing both forms, they were then able to complete the questionnaire.

The purpose of the study followed by the directions were then explained by the researcher. The questionnaire had to be completed during the hemodialysis session in which it is distributed. The questionnaire took roughly 10-20 minutes which gave participants time to complete during a single hemodialysis session. The questionnaire was kept separate from the consent and HIPAA forms to assure anonymity. No compensation was provided for participation in this study.

To keep anonymity in the study, patients were designated a specific number during collection of laboratory values. After completion, each questionnaire was designated with the same number of the patient who completed it. The name of the patient was then removed to eliminate any identifying information. All patient health information was kept at the dialysis clinic where the study took place.

Data Analysis Procedures

The laboratory results and data collected from the questionnaires were ran through the Statistical Package for Social Sciences (SPSS). The demographic and health information section (Part II) of the questionnaire was analyzed using descriptive statistics to find the means, standard deviations, and frequencies of both groups. For the 14 renal nutrition knowledge (Part I) questions, a percentage was determined based on a score.

One point was given if the question was answered correctly, and zero points were given if the question was answered incorrectly or “I don’t know” was chosen. The highest score

that a participant could receive was 14 points, or 100%. The lowest score a participant could receive was zero points, or 0%. An average score of both groups were accumulated and compared for significance using an independent t-test. A p-value of <0.05 was considered statistically significant for all t-tests.

CHAPTER IV

JOURNAL ARTICLE

Introduction

Chronic kidney disease (CKD) can be defined as any condition that reduces kidney function over time (“Kidney disease statistics,” 2016). Approximately 14% of the general population in the United States have CKD. The beginning stages of CKD often go undetected as there is no symptoms (“Kidney disease statistics,” 2016). However, once this disease advances, the damage to the nephrons of the kidney is irreversible, and it can quickly lead to end stage renal disease (ESRD) (Garcin, 2015). Currently, more than 660,000 individuals suffer from ESRD, leaving more than 460,000 of them to rely on renal replacement therapy, otherwise known as dialysis, to sustain life (“Kidney disease statistics,” 2016; Barnett, Li Yoong, Pinikahana, & Si-Yen, 2008). Hemodialysis the most common dialysis treatment (opposed to peritoneal dialysis) and requires patients to attend a facility three times a week to remove the fluid and toxins that the kidney no longer can (Barnett, Li Yoong, Pinikahana, & Si-Yen, 2008).

Although hemodialysis performs the important filtering work of the kidneys, a regimented diet and medications are also required to prevent the accumulation of toxins and electrolytes in the body between treatment sessions (Barnett, Li Yoong, Pinikahana,

& Si-Yen, 2008). This complex renal diet requires potential restrictions in phosphorus, potassium, sodium, and fluid (Durose, Holdsworth, Watson, and Przygrodzka, 2004).

Adherence to the renal diet improves patients’ quality of life, reduces medical symptoms

and increases life expectancy. However, many hemodialysis patients are nonadherent with their renal diet. This can be detrimental to the health of the patient as excess consumption of phosphorus, potassium, and sodium can lead to poor bone health, heart rhythm disturbances, and increased blood pressure respectively. Nonadherence to these nutrients can be reflected in the laboratory tests such as serum phosphorus, serum potassium, and interdialytic weight gain (Durose, Holdsworth, Watson, and Przygrodzka,

2004).

In hemodialysis care, nonadherence is observed in up to 85% of patients and is defined by skipping or shortening treatment sessions, refusing to take medications, and not following the recommended diet (Oquendo, Asencia, & de la Nieves, 2017).

Prominent factors that have been researched as reasons contributing to nonadherence include psychological, social, self-efficacy, and education (Taskapan et al., 2005; Mousa,

Ataba, Al-ali, Alkaiyat, & Zyoud, 2018). Psychological disorders, especially depression, are very prevalent in patients due to the stress, complications, and restrictions that are faced with the intense treatment of hemodialysis (Ravaghi et al., 2017). Social factors play a role in nonadherence due to the costs and extensive time commitment of hemodialysis that affects relationships and time for a career (Georgianni et al., 2016).

Hemodialysis requires patients to have self-care and confidence to improve their health outcomes, and lack of this self-efficacy contributes to nonadherence (Mousa, Ataba, Al- ali, Alkaiyat, & Zyoud, 2018).

Dietary education in hemodialysis has been researched in different ways, yielding mixed results. The majority of studies aim to educate hemodialysis patients with nutrition

information and monitor this correlation through laboratory results (Tsai et al., 2016;

Durose, Holdsworth, Watson, & Przygrodzka, 2004). However, many of these education- related studies only focus on one component of the renal diet, such as phosphorus or fluid. There is limited research investigating patient’s knowledge of numerous renal diet components (phosphorus, potassium, sodium, etc.) and the effect on dietary adherence.

There is also limited research of patient’s knowledge of medical consequences that are associated with dietary nonadherence. Therefore, the purpose of this study was to determine the difference in knowledge of renal diet and renal medical symptom information in adherent and nonadherent adult hemodialysis patients. It was hypothesized during the study that the two designated groups of patients would score differently on the knowledge questionnaires. Hypothesis 1 stated there will a significant difference in knowledge scores between adherent and nonadherent patient groups.

Methodology

Participants

Participants in this study were adult hemodialysis patients at a Centers for

Dialysis Care (CDC) facility in Northeast Ohio. The participants were of any gender and ethnicity. The population was restricted to adults (18 years and older) and those with a diagnosis of end stage renal disease. A convenience sample was utilized. Only one dialysis facility was used for this study and patients from every Monday-Wednesday-

Friday and Tuesday-Thursday-Saturday session were included.

Review of Laboratory Results

An assessment of laboratory results was required to determine whether each patient was considered adherent or nonadherent to their renal diet. This was determined by three laboratory measures of serum phosphorus, serum potassium, and percentage of interdialytic weight gain. An average of each determinate was taken from the months of

Instrumentation

Data was collected from the participants with a paper questionnaire (Appendix B).

This questionnaire contained questions related to renal nutrition, medical symptoms, demographics, and health information. The layout of the questionnaire was created with the help of a former questionnaire from Durose, Holdsworth, Watson, and Przygrodzka

(Appendix C) that sought to determine if dietary compliance in hemodialysis patients is influenced by knowledge of the diet and medical consequences of noncompliance. This study was conducted at Nottingham City Hospital in Nottingham, United Kingdom. The questionnaire contains demographics, restricted food knowledge (potassium, phosphorus, sodium, and fluid), knowledge of medical complications of dietary noncompliance, and questions regarding nutrition counseling that the patients experienced. The questionnaire was edited to fit the purpose of this study. The questionnaire used for this study was

adjusted with food choices that are common in the United States. The questionnaire was also adjusted to be multiple choice and only have one correct answer per question.

Questions related to counseling was omitted, as patients in this study did not have any specific nutrition counseling for this research. Permission was granted by the authors of the original study. The finalized questionnaire (Appendix B) consisted of 26 multiple- choice questions.

Part I of the questionnaire included five questions that tested the participants on the renal diet components of phosphorus, potassium, sodium, fluid, and protein. The participants were asked to choose a single food item with the lowest amount of the suggested nutrient. Part II involved nine questions that asked what medical side effect correlated to high consumption of phosphorus, potassium, sodium, and fluid. The last section of part II was composed of questions related to salt substitutes, phosphorus binders, and albumin. Part III of the questionnaire included 12 total questions relating to the demographics and health information of the participants. The first questions were general demographic questions regarding gender, age, ethnicity, education, and work status. The next questions were self-reported health information asking the participants if they have been diagnosed with diabetes and/or high blood pressure, are taking a phosphorus binder, and have been recommended to follow a fluid restriction. The participants were asked to write in the length of time they have been on dialysis. The next question involved a Likert-scale ranging from “strongly agree” to “strongly disagree” asking the participants if they feel that they are successful with their renal diet. Last, the participants were asked if they have ever received dietary advice from a dietitian.

Data Collection Procedures

This research was approved by Kent State University’s Institutional Review

Board. The research was also approved by the CDC facility. Prior to research participation, the participants were required to read and sign a letter of consent (Appendix

D) and HIPAA authorization form (Appendix E) which explained the purpose of the study, information that will be used, and researchers’ contact information. Participants were provided a copy of both forms and the purpose of the study and directions were then explained. The questionnaire had to be completed during the hemodialysis session in which it is distributed which was feasible as it took roughly 10-20 minutes to complete.

The questionnaire was kept separate from the consent and HIPAA forms to assure anonymity. No compensation was provided for participation in this study.

Data Analysis Procedures

nutrition knowledge (Part I) questions, a percentage was determined based on a score.

One point was given if the question was answered correctly, and zero points were given if the question was answered incorrectly or “I don’t know” was chosen. The highest score that a participant could receive was 14 points, or 100%. The lowest score a participant could receive was zero points, or 0%. An average score of both groups (adherent and nonadherent) were accumulated and compared for significance using an independent t- test. Independent t-tests were also used to compare questionnaire scores to demographic information such as gender and ethnicity. A p-value of <0.05 was considered statistically significant for all t-tests.

Results

Approximately 35 hemodialysis patients were approached to participate in the questionnaire, and 30 participated. No patients initially had to be eliminated from the analysis process as they all fit the inclusion criteria. One participant had to be eliminated from the questionnaire analysis as 100% of the knowledge questions were not answered.

Multiple participants did not fully complete the demographic information of the questionnaire, so number of participants varied question to question. Overall, 29 participants’ questionnaire results were used for data analysis.

Demographics

The demographic information of the participants in the study is represented in

Table 1 and categorized into total, adherent, and nonadherent subgroups. The age of participants ranged from 25 to 90 years old, with a mean age of 62.59 ± 17.12 years. The

mean dialysis length of the population was 52.88 months, with a standard deviation of

36.39 months. The majority of patients (92.3%) reported taking phosphorus binders.

When asked if they are successful with their renal diet, 15.4% of participants reported to

“strongly agree,” 53.8% reported to “agree,” 23.1% reported to be “neutral,” 7.7% reported to “disagree,” and 0% reported to strongly disagree.

Laboratory Results

Table 2 shows the mean laboratory results of phosphorus, potassium and interdialytic weight gain (IDWG) percentage for the total population, adherent population, and nonadherent population. There was a significant difference in the average phosphorus laboratory results between the adherent and nonadherent patient groups

(p≤0.001). There was also a significant difference between the average potassium between the two patient groups (p=0.026). However, there was not a significant difference between the interdialytic weight gain between the two patient groups

(p=0.131).

Knowledge Questionnaire

Table 3 shows the percentage of correct and incorrect answers for the 14 questions of the knowledge questionnaire for total population, adherent population, and nonadherent population. Overall, there was no significant difference in exam scores between the adherent and nonadherent samples (p=0.278). The mean exam score out of

14 for the total sample was 10.24±2.49. The lowest scoring question was number ten

(Table 3), with only 20.7% of total participants answering correctly. The highest scoring was number three (Table 3), with 96.6% of total participants answering correctly.

Table 1 Demographics of Adult Hemodialysis Patients at Centers for Dialysis Care in Northeast Ohio Assessed on Renal Nutrition Knowledge (N =29) Demographics Total (n) Adherent (n) Nonadherent (n)

Sex

Male 11 3 8

Female 15 9 6

Education

Did not finish high school 5 2 3

High school diploma/GED 16 8 8

Associate degree/Trade school 3 2 1

College degree 3 2 1

Ethnicity

African American 19 10 9

Caucasian 10 5 5

Employment Status

Unable to work 4 2 2

Employed part time 3 1 2

Employed full time 3 0 3

Retired 18 11 7

Living Arrangement

Nursing home 2 1 1

Free living 28 14 14

Table 2 Average Laboratory Results of Adults Hemodialysis Patients Participating in a Nutrition Knowledge Questionnaire at Centers for Dialysis Care (N=30) Population Phosphorus (mg/dL) Potassium (mEq/L) Interdialytic Weight Gain (%)

Adherent 4.49± 0.58 4.55± 0.50 2.22± 0.81

Nonadherent 6.67± 0.80 4.97± 0.46 2.74± 1.02

Total 5.58± 1.30 4.76± 0.52 2.48± 0.94

Note. Laboratory results are displayed as Mean ±Standard Deviation

Table 3 Renal Nutrition and Medical Symptom Knowledge of Adult Hemodialysis Patients Surveyed at a Centers for Dialysis Care in Northeast Ohio (N=29) Question Classification % C (n) % IC (n)

1. Which of these foods contain the LEAST amount of Total 93.1 (27) 6.9 (2) potassium in one serving? Adherent 92.9 (13) 7.1 (1)

Nonadherent 93.3 (14) 6.7 (1)

2. Which of these foods contain the LEAST amount of Total 75.9 (22) 24.1 (7) phosphorus in one serving? Adherent 64.3 (9) 35.7 (5)

Nonadherent 86.7 (13) 13.3 (2)

3. Which of these foods contain the LEAST amount of Total 96.6 (28) 3.4 (1) salt in one serving? Adherent 100 (14) 0 (0)

Nonadherent 93.3 (14) 6.7 (1)

4. Which of these foods contain the LEAST amount of Total 72.4 (21) 27.6 (8) protein in one serving? Adherent 71.4 (10) 28.6 (4)

Nonadherent 73.3 (11) 26.7 (4)

5. Which of these foods is a concern when limiting Total 79.3 (23) 20.7 (6) fluid intake? Adherent 78.6 (11) 21.4 (3)

Nonadherent 80 (12) 20 (3)

6. Why is it important to restrict potassium in your Total 34.5 (10) 65.5 (19) diet? Adherent 42.9 (6) 57.1 (8)

Nonadherent 26.7 (4) 73.3 (11)

Abbreviations. C, correct; IC, incorrect; n, number of participants in questionnaire sample.

Table 3 (continued) Renal Nutrition and Medical Symptom Knowledge of Adult Hemodialysis Patients Surveyed at a Centers for Dialysis Care in Northeast Ohio (N=29) Question Classification % C (n) % IC (n)

7. Why is it important to restrict phosphorus in your Total 69 (20) 31 (9)

diet? Adherent 57.1 (8) 42.9 (6)

Nonadherent 80 (12) 20 (3)

8. Why is it important to restrict salt in your diet? Total 93.1 (27) 6.9 (2)

Adherent 85.7 (12) 14.3 (2)

Nonadherent 100 (15) 0 (0)

9. Why do you need to reduce fluid intake? Total 82.8 (24) 17.2 (5)

Adherent 71.4 (10) 28.6 (4)

Nonadherent 93.3 (14) 6.7 (1)

10. Many salt substitutes (ex. “NoSalt”) are not Total 20.7 (6) 79.3 (23) suitable for hemodialysis patients because they contain ______? Adherent 14.3 (2) 85.7 (12) Nonadherent 26.7 (4) 73.3 (11)

11. Too much intake of ______may cause itching of Total 62.1 (18) 37.9 (11) the skin? Adherent 50 (7) 50 (7)

Nonadherent 73.3 (11) 26.7 (4)

12. Reducing the consumption of ______can help Total 89.7 (26) 10.3 (3) decrease thirst. Adherent 100 (14) 0 (0)

Nonadherent 80 (12) 20 (3)

13. Consumption of foods high in ______can help Total 62.1 (18) 37.9 (11) to keep albumin levels in range. Adherent 57.1 (8) 42.9 (6)

Nonadherent 66.7 (10) 33.3 (5)

14. When should you take your phosphorus binders? Total 96.6 (28) 3.4 (1)

Adherent 92.9 (13) 7.1 (1) Nonadherent 100 (15) 0 (0)

Abbreviations. C, correct; IC, incorrect; n, number of participants in questionnaire sample.

Discussion

The purpose of this study was to determine if there is a difference in knowledge of renal diet and renal medical symptom information in adherent and nonadherent adult hemodialysis patients. The results of this study indicated that there was not a significant difference in renal nutrition and medical symptom knowledge between adherent and nonadherent hemodialysis patients. This means that Hypothesis 1 was rejected.

Characteristics of Study Population

The demographic data collected from this study varied in consistency with data collected by surveys in the United States. Ethnicity in this study was consistent with trends collected by the National Center for Chronic Disease Prevention and Health

Promotion (2017). It was reported that African Americans are three times more likely to progress into chronic kidney disease than Caucasians (“National Center for Chronic

Disease,” 2017). This was similar to the ethnicity demographics of this study with 65.5% participants African American and 34.5% participants Caucasian. The ethnicity distribution in the location of the study also aligns with the results of this study

(“Bedford, OH,” n.d.). Age distribution for this study was not consistent to ESRD age group incidence rates recorded by the United States Renal Data System (USRD) (2018).

The age group that was most prevalent with ESRD was 75 years of age and older, followed by the 65-74 age group (“Chapter 1,” 2018). However, this study had the highest prevalence in the 65-74 age group (31.0%), followed by the 45-64 age group

(27.6%). This particular hemodialysis clinic may have a younger population that does not

represent the national average. Also, hemodialysis is available at many long-term care facilities, reducing the number of older adults (75 years and older) getting treated at a hemodialysis clinic that requires transportation. Another demographic that was not consistent was gender. The National Center for Chronic Disease Prevention and Health

Promotion reported that men are 64% more likely to develop ESRD (2017). However, this study consisted of a higher number of females (57.7%) versus males (42.3%). In the geographical area of the study, the male/female ratio is 0.9/1, indicating a reason for more females at this facility (“Bedford, OH Demographics,” n.d.). Level of education varied throughout research related to hemodialysis patients. Of the studies that did include education level in the demographics, primary/elementary school had the highest prevalence (Rizk, Hilligsmann, Karavetian, & Evers, 2017; Taskapan et al., 2005; Tsai et al., 2016). These statistics were inconsistent with this study as the highest percentage of participants (59.3%) finished high school. This may be related to the high number of

Caucasian females that participated. There are also a higher percentage of females who obtain higher educations in the area (“Bedford, OH,” n.d.), possibly explaining the high education levels because of the higher percentage of females that participated.

Laboratory Results

Laboratory results for the sample of this study indicated an equal amount of adherent and nonadherent patients. This is inconsistent with data as diet adherence has been reported to be as high as 86% in the hemodialysis population (Oquendo, Asencio, & de las Nieves, 2017). The laboratory markers of serum phosphorus, serum potassium, and interdialytic weight gain were used to assess dietary adherence. These three laboratory

tests have been studied as reliable markers of dietary nonadherence (Clark, Farrington, &

Chilcot, 2014; Durose, Holdsworth, Watson, and Pryzgrodzka, 2004). Although these three laboratory tests are commonly used to determine adherence, the actual cut-off points have been debated and are not always standardized throughout research (Clark,

Farrington, & Chilcot, 2014). Phosphorus was the most common laboratory test out of range among the sample (50%), and potassium was the least common laboratory test out of range (0%). The high percentage of adherent participants in this study may be related to the demographics. The study population had high education levels which can indicate higher comprehension. Many of the participants were also retired, therefore eliminating the stress of a job and allowing more time to focus on diet. There were significant differences in lab results between adherent and nonadherent samples for phosphorus and potassium. This indicates that there is more nonadherence in phosphorus and potassium control. There was no significant difference in interdialytic weight gain between the adherent and nonadherent samples, indicating that this is not a significant factor of nonadherence compared to phosphorus and potassium. This could be due to the fact that

IDWG is taken at every session, not just once monthly like the other two. Therefore, patients are more often reminded if it is not in-range.

Renal Nutrition and Medical Symptom Knowledge

Knowledge questionnaire scores between the adherent and nonadherent groups were not significant. The overall findings were consistent with the study by Durose,

Holdsworth, Watson, and Pryzgrodzka that also compared the results of a renal nutrition knowledge questionnaire between compliant and noncompliant groups of hemodialysis

patients (2004). Both studies found that knowledge of a renal diet and medical consequences of nonadherence were not predictive of dietary adherence (Durose,

Holdsworth, Watson, and Pryzgrodzka, 2004).

When looking directly at each question of the questionnaire in this study, there is a pattern that arises. Patients scored higher when asked about the nutrients in the renal diet compared to the medical symptoms associated with that nutrient. This is accurate for phosphorus, potassium, and sodium, with total participants scoring higher on the questions that asked which food contained the least amount (Part I), versus the questions that asked why it is important to restrict that item in the diet (Part II). The study by

Durose, Holdsworth, Watson, and Pryzgrodzka also found that patients were more knowledgeable about questions relating to the renal diet versus the medical complications

(2004). This may be related to nutrition education focusing more heavily on food items instead of related symptoms.

The lowest scoring questions were both related to potassium and asked (1) why it is important to restrict potassium and (2) why salt substitutes are not suitable (the answer being potassium). Salt substitutes that contain potassium are recommended for individuals with high blood pressure who do not suffer from kidney complications (“Salt substitutes,” 2015). Therefore, patients may be familiar with salt substitutes if they experienced high blood pressure prior to developing CKD. Although many patient’s

ESRD diagnosis has been the result of high blood pressure, the etiologies for the sample in this study were unknown. This was interesting as no participants’ average serum potassium was out of range. Therefore, patients may be receiving more education about

nutrients that are negatively impacting their laboratory results, such as phosphorus and sodium. In fact, the three questions regarding sodium on the questionnaire received average total scores of 90% and above. This may also be attributed to the physical properties of sodium (salty taste) that make this nutrient easily identifiable to patients.

Also, sodium impacts interdialytic weight gain, which is measured at every dialysis session. Being aware of this weight gain three times per week increases the accountability and increases awareness of sodium and fluid intake.

Limitations

The first limitation of the study is that data was self-reported. This is especially applicable to the demographic and health information given by the patients and it cannot be assumed that this is valid. Another limitation of this study is the cognitive and literacy capabilities required for a written questionnaire. This is problematic considering that cognitive impairment and low literacy levels are common in this population (Lambert,

Mullan, & Mansfield, 2017). Although assistance was provided, some patients might have not asked for help if needed. The laboratory standards used were based on Centers for Dialysis Care. The potassium standard used at CDC is higher (5.9 mEq/L) than the standard at other facilities. This study also assumed that the laboratory markers of phosphorus, potassium, and IDWG are accurate markers of adherence. Although studies have noted the accuracy of these laboratory tests, the actual reference ranges are not standardized in research (Clark, Farrington, & Chilcot, 2014). This study used a convenience sample and had an overall small sample size (n=30). This means that the

results may not represent a wider population or hemodialysis patients spanning the country, or even the state.

Applications

With no significant difference in knowledge scores, this indicates that the nonadherent patients were just as knowledgeable as the adherent patients. Therefore, it’s not the knowledge, but the actual behavior change that needs to be the focus when managing dietary habits. Including techniques in treatment that promote positive behavior change such as the Health Belief Model or the Stages of Change Model may be useful motivators for hemodialysis patients (Durose, Holdsworth, Watson, and

Pryzgrodzka, 2004; Oquendo, Asencia, & de la Nieves, 2017). These models allow patients to explore the barriers that are preventing them from behavior change and the benefits that may arise by the effectiveness of actions (“Behavioral Change Models,” n.d.).

This study showed an overall gap of knowledge in renal nutrition and medical symptom knowledge. The total study population received an average score of 73% on the questionnaire (“C” score). More missed questions came from the questions regarding the renal consequences of noncompliance. This suggests that although hemodialysis patients are knowledgeable about what to consume, they might not fully understand why it is important to make the correct dietary choices. This could be due to the patient not physically experiencing these consequences such as deterioration of the bone.

From the prospective of a healthcare professional, this information can be used when further investigating factors of nonadherence. The findings of this study reflect that dietary nonadherence is an extremely complex issue and other factors may play a larger role such as psychological and social factors. Further research should work towards establishing measures of identifying nonadherence that can be standardized. It is also important that healthcare professionals are making sure that patients are fully comprehending information – not just the what but also the why. Dietitians can use this information to shift renal nutrition education more towards the consequences that overconsumption or underconsumption of specific nutrients might have on the body, instead of just the food items to avoid.

Conclusion

Dietary nonadherence is very prevalent in the hemodialysis population. This study indicated that education is not a significant factor of nonadherence. Education techniques should incorporate motivation and behavior change methods that also communicate the importance of why dietary adherence is important. This study highlights the complexity of dietary adherence and the many factors that may be associated with it.

APPENDICES

APPENDIX A LABORATORY STANDARDS FOR ADHERENCE DETERMINATION

Appendix A Laboratory Standards for Adherence Determination

Laboratory Standards for Adherence* Phosphorus Potassium Interdialytic Weight Reference Range 3.0-5.5 3.5-5.9 Weight should not (Adherent) exceed 4% of a patient’s body weight between dialysis treatments Nonadherent Range ≥ 5.6 ≥ 5.9 > 4% body weight *Standards based on Centers for Dialysis Care

APPENDIX B RENAL NUTRITION KNOWLEDGE QUESTIONNAIRE

Appendix B Renal Nutrition Knowledge Questionnaire Please answer the questions to the best of your knowledge by filling in the box next to the correct answer. You may stop this survey at any time.

Part I: Nutrition Questionnaire 1. Which of these foods contain the LEAST amount of potassium in one serving?  Oranges  Bananas  Potatoes  Apples  I don’t know

2. Which of these foods contain the LEAST amount of phosphorus in one serving?  Cheddar cheese  Sherbet  Milk  Colas (i.e. Coke, Pepsi)  I don’t know

3. Which of these foods contain the LEAST amount of salt in one serving?  Canned soup  Potato chips  Fresh beef  Bacon  I don’t know

4. Which of these foods contain the LEAST amount of protein?  Beef  Pasta  Chicken  Fish  I don’t know

5. Which of these foods are a concern when limiting fluid intake?  Ice cream  Gravy  Soup  All of the above  I don’t know

6. Why is it important to restrict potassium in your diet?  Heart rhythm disturbances  Damages to the bones  Makes the body retain water  Increases blood pressure  I don’t know

7. Why is it important to restrict phosphorus in your diet?  Raises blood sugar  Damage to the bones  Makes the body retain water  Increases blood pressure  I don’t know

8. Why is it important to limit salt in your diet?  Damage to the bones  Increases fluid gains  Hair loss  Itchy skin  I don’t know

9. Why do you need to reduce your fluid intake?  Increases blood pressure  Itchy skin  Damage to the bones  Increases blood sugar  I don’t know

10. Many salt substitutes (ex. “NoSalt”) are not suitable for hemodialysis patients because they contain ______?  Protein  Potassium  Phosphorus  Calcium  I don’t know

11. Too much intake of ______may cause itching of the skin.  Phosphorus  Salt  Potassium  Sugar  I don’t know

12. Reducing the consumption of ______can help decrease thirst.  Phosphorus  Potassium  Salt  Calcium  I don’t know

13. Consumption of foods high in ______can help to keep albumin levels in range.  Protein  Sugar  Calcium  Phosphorus  I don’t know

14. When should you take your phosphorus binders?  During meals and snacks  Once a week  In the morning  At bedtime  I don’t know

Part II: Demographic and Health Information

15. Gender  Male  Female

16. Age (Please fill in) ______

17. Please indicate your ethnicity  African American  Caucasian/White  Asian  American Indian & Alaskan Native  Native Hawaiian & Other Pacific Islander  Other

18. Please indicate your highest level of education:  Did not finish high school  High school diploma/GED  Associate’s degree/Trade school  College degree  Masters  PhD  Prefer not to answer

19. Please describe your employment:  Employed full time  Employed part time  Unemployed  Retired  Student  Unable to work  Prefer not to answer

20. Do you suffer from diabetes?  Yes  No  Prefer not to answer

21. Do you suffer from high blood pressure?  Yes  No  Prefer not to answer

22. How long have you been on dialysis? ______years ______months

23. Are you currently on a fluid restriction?  Yes  No  I don’t know  Prefer not to answer

24. Are you currently on a phosphorus binder?  Yes  No  I don’t know  Prefer not to answer

25. Do you feel that you are compliant with your diet?  Strongly Agree  Agree  Neutral  Disagree  Strongly Disagree  Prefer not to answer

26. Have you received dietary advice from a dietitian?  Yes  No  I don’t know

APPENDIX C QUESTIONNAIRE BY DUROSE, HOLDSWORTH, WATSON, & PRZYGRODZKA

Appendix C Questionnaire by Durose, Holdsworth, Watson, & Przygrodzka

STUDY OF DIETARY KNOWLEDGE AND COMPLIANCE IN RENAL PATIENTS RECEIVING HAEMODIALYSIS Patient knowledge questionnaire Patient No.______Date _ _ / _ _ / _ _ _ _

1) Gender Male Female

2) Age Under 18 18-24 25-34 35 - 44 45-54 55-64 65-74 75-84 85+

3) Please indicate your ethnic origin: White Pakistani Black - Carribean Bangledeshi Black African Chinese Black – other Asian – other Indian Any other

Please indicate your marital status: Single Co-habiting Married Divorced/separated Widowed 5) Housing tenure. Do you:- a) Own the place where you live b) Rent the place where you live c) Live with relatives/friends d) Live in a residential care home e) Live in a warden aided house/flat

6) How many people live in your household? (Include yourself) a) Adults _ _ b) Children under 16 _

7) Who plans/organises most of your meals? Who cooks most of your meals? Yourself Spouse/partner Friend/relative Carer Care home catering Social services Dine out Supermarket (ready meals) Other

8) Are you currently: Employed full time Employed part time Unemployed Full time home maker Retired Student Unable to work Don’t wish to say

9) What is your occupation (if retired or unemployed what was your longest serving employment)? ...... Were you an employee/employer/self employed (please circle)

10) Do you suffer from diabetes? YES NO

11) Do you follow any other kind of special diet? YES NO

12) How long have you been on dialysis? _ _ months _ _ years

13) Do you remember receiving dietary advice from the renal dietitians? YES NO Don’t know

14) How long after diagnosis did you receive dietary advice? 1-2 Days 3-4 Days 1 Week >1 Week Don’t know

15) Which dialysis session do your normally attend? Morning Afternoon Evening Any

16) On a scale of one to five, how well do you think you understood the dietary advice you received from the renal dietitians? Fully understood Can’t remember Mostly understood Don’t know Understood about half Understood a little No understanding at all

17) Do you think you need any more dietary advice? YES NO Don’t know

18) What issues would you like further dietary advice on? Phosphate Starch Fluid Sugar Potassium Fat Salt Protein Weight loss Other

19) i) Do you remember being told about a) fluid; b) phosphate; c) potassium; d) salt? ii) If yes, do you remember the advice given? i) ii)

Remember How Don’t Stop Don’t N/A

nutrient? change change intake recall YES NO a) Fluid

b) Phosphate

c) Potassium

d) Salt

20) These two questions are about potassium a) Do you know why potassium is relevant to your diet? Harmful to heart Further damage kidneys Damage bones Will increase blood urea level Will raise blood cholesterol levels Makes body retain water Don’t know Other ......

b) Which of these foods are high in potassium? YES NO Don’t know Apples Tinned fruit without juice Dried fruit Mushrooms Potato crisps Banana Boiled sweets

21) These two questions are about phosphate a) Do you know why phosphate is relevant to your diet? Damage bones Harmful to heart Further damage kidneys Will increase blood urea level Will raise blood cholesterol levels Makes body retain water Don’t know Other ......

b) Which of these foods are high in phosphate? YES NO Don’t know Cheddar cheese Oranges Cottage cheese Oily fish Yogurt Chocolate Eggs

22) These two questions are about salt a) Do you know why salt is relevant to your diet? Makes body retain water Will raise blood pressure Damage bones Harmful to heart Further damage kidneys Will increase blood urea level Don’t know Other ......

b) Which of these foods are high in salt? YES NO Don’t know Smoked haddock Unsmoked haddock Packet soup Crisps Chocolate Apples Bacon 23) Is fluid restricted in your diet? YES NO (if no goto Q25)

24) These two questions are about fluid a) Do you know why you need to reduce your fluid intake? Harmful to heart Breathing difficulties Makes body weight increase Will raise blood pressure Damage bones Further damage kidneys Don’t know Other ......

b) Which of these foods contain a lot of fluid? YES NO Don’t know Bananas Ice cream Custard Cakes Gravy Soup Yogurt

87 a) Are you prescribed phosphate binding medication? YES NO Don’t know b) Do you take it? All the time Most of the time Occasionally Not at all

26) Which phosphate binding medication do you take? Titrilac Calcichew Phosex Renegal

THE END

Thank you very much for taking the time to help the staff here at the hospital. We appreciate your cooperation and patience in filling in this questionnaire.

APPENDIX D STUDY CONSENT FORM

Appendix D Study Consent Form

THE EFFECT OF RENAL DIET AND MEDICAL SYMPTOM KNOWLEDGE ON DIETARY ADHERENCE IN ADULT HEMODIALYSIS PATIENTS You are being invited to participate in a research study. This consent form will provide you with information on the research project, what you will need to do, and risks and benefits of the research. Your participation is completely voluntary. It is important that you ask questions and fully understand the research in order to make an informed decision. The purpose of this study is to determine a relationship between nutrition knowledge and dietary adherence. This will test your knowledge about renal diet components and the side effects that may occur when excess nutrients are consumed. If you agree to participate in this study, you will complete a questionnaire that will take about 10-15 minutes. The questionnaire is completely anonymous. You will be asked to answer questions regarding renal nutrition followed by demographic questions. This research will not benefit you directly. However, your participation in this study will help us to better understand the impact that dietary knowledge has on compliance in hemodialysis patients. There are no anticipated risks beyond those encountered in everyday life. If you do not wish to answer a question, you may skip it and go on to the next question. No identifying information will be collected. Your laboratory history was examined to determine the color of the questionnaire. However, that information is no longer needed and will not be included in this study. Your signed consent form will be kept separate from your study data, and responses will not be linked to you. Although your name was used to identify you, it will not be used after distribution of the questionnaire. Taking part in this research study is entirely up to you. You may choose not to participate or you may discontinue your participation at any time without penalty. If you have any questions or concerns about this research, you may contact me at [email protected] or contact the director of this thesis, Dr. Natalie Caine-Bish, at [email protected]. This project has been approved by the Kent State University Institutional Review Board (IRB). If you have any questions regarding your rights as a participant, you may contact the IRB at 330-672-2704. I have read this consent form and have had the opportunity to have my questions answered to my satisfaction. I voluntarily agree to participate in this study. I understand that a copy of this consent form will be provided to me for future reference.

______Participant Signature Date

APPENDIX E HIPAA AUTHORIZATION FORM

Appendix E HIPAA Form

Authorization to Use or Disclose (Release) Health Information

If you sign this document, you give permission to Kelsey Hagens (Co-Investigator of this research) at Kent State University to use your health information that identifies you for the research study described here:

The Effect of Renal Diet and Renal Symptom Knowledge on Dietary Adherence in Adult Hemodialysis Patients.

The health information that we may use for this research includes:

• Information in a medical record including medical diagnoses • Lab tests including phosphorus, potassium, interdialytic weight gain, and glucose

The health information listed above may be used by and/or disclosed (released) to: Researchers from Kent State University

Kent State University is required by law to protect your health information. By signing this document, you authorize Kent State University to use and/or disclose your health information for this research. Those persons who receive your health information may not be required by Federal privacy laws (such as the Privacy Rule) to protect it and may share your information with others without your permission, if permitted by laws governing them.

Please note that:

• You may change your mind and revoke (take back) this Authorization at any time, except to the extent that Kent State University has already acted based on this Authorization. To revoke this Authorization, you must write to: Kelsey Hagens at [email protected].

This Authorization will expire in 120 days

______Signature of participant or participant's Date personal representative

______Printed name of participant or If applicable, a description of the personal participant's personal representative representative's authority to sign for the participant

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