Psychosocial Aspects of Chronic Kidney Disease: Exploring the Impact of CKD, Dialysis, and Transplantation on Patients

Psychosocial Aspects of Chronic Kidney Disease: Exploring the Impact of CKD, Dialysis, and Transplantation on Patients provides an overview of the emotional and psychological challenges faced by people with renal disease. This book outlines the epidemiology and treatment of the psychosocial factors affecting them. The sections in the book cover psychiatric illness in the earlier and middle stages of chronic kidney disease, end-stage renal disease treated with dialysis, and renal transplantation. The book concludes with a section on special considerations, delving into topics such as treating children and adolescents, quality of life, caregiver burden, challenges in psychosocial research in kidney disease, and future directions for intervention.

• Includes chapters that are written by a leading group of international researchers
• Emphasizes practical approaches to patient care and treatment issues
• Explores psychosocial issues related to hemodialysis and peritoneal dialysis
• Discusses available treatment for anxiety, depression, sleep disturbances, pain, nonadherence, cognitive dysfunction, palliative care, and other psychosocial concerns

• Language: English
• Publisher: Academic Press
• Release date: Sep 20, 2020
• ISBN: 9780128170816

Book preview

System

Section I

Introduction

Chapter 1: Introduction

Norman B. Levy    Professor Emeritus, Psychiatry, SUNY, Downstate Medical Center, Brooklyn, NY, United States

Keywords

Dialysis; Depression; Uncooperative behavior; Anxiety

Dialysis: A Poem

The dialysis salesman wears glasses and a dark suit:

"Do you

Take this machine

In sickness and in health

Till death do you part?"

I do.

Reclining

On the nausea-green hospital chair:

Below me children playing in the street:

Above me old men dying of coronaries

I am

The final essence of the technological age,

Flesh conjoined with plastic, vessels with steel.

Coils, alarms, twisted tubing turning scarlet

Deep within the machine dark blood

Mixing with fluid, cellophane separated,

plugged in and turned on.

Dear God

Purify me.

¹

Willem Kolff was a member of an old Dutch patrician family active in resistance to the Nazi occupation of the Netherlands. One of his first patients was a 22 years old slowly dying of kidney failure. This prompted Kolff’s interest in artificial renal replacement treatment. His first prototype dialyzer was developed by him in 1943 and was made of used autoparts and orange juice cans. After failure to treat 15 patients who eventually died of renal failure, in 1945, his first patient, a 67-year-old woman, survived. Thus Kolff is recognized as the inventor of the dialysis machine.

Major problems existed concerning delivery of care, which needed to be solved before dialysis technology could be useful in large populations. These included the need for an adequately trained staff, facilities for delivery of care, the cost of care, and an important technical problem. The need for repeated venipuncture by a large needle for the entry of blood into the dialysis machine and another for the return of blood from the machine to the patient would present the problem of limited blood access because of clot formation and vascular failure. As in the case of many other problems, the answer was simple. Belding Scribner enlisted the help of Wayne Quinton, an instrument designer. The two fashioned a U-shaped tube made of Teflon connecting an artery and vein in a patient. Teflon, a plastic substance, had the advantage over glass in not enhancing clot formation. This simple invention resulted in the saving of many lives and was the major factor resulting in Scribner winning the Lasker Award, seen by many as next to the Nobel Prize in prestige.²

Now that there was the mechanism for delivery of care to those with kidney failure, psychological problems arose in these fortunate people who need not die of uremia, as all previous patients did before them. Among the earliest psychiatrists addressing these problems were Atara Kaplan De-Nour in Jerusalem, Norman Levy in Brooklyn, and Harry Abram at Vanderbilt University. In Brooklyn the young nephrologist Eli Friedman received a grant from the US National Institutes of Health to open a small dialysis unit at the Kings County Hospital, a large public municipal hospital in Brooklyn, New York.³ But his team was immediately beset with the problem of selection of patients for treatment. This was a decision regarding who should live and who should die.

At about the same time in Seattle, a team headed by Christopher Blagg was faced with the same problem of selection—whom to accept and whom to reject for their dialysis unit. They accepted the decisions of a committee composed of distinguished laymen in their community. This committee put a life value on each applicant. For example, a mother of two was worth more to save than a middle-aged bachelor. At the Kings County Hospital, the decision was left to a small selection committee consisting of two senior nephrologists and two transplant surgeons. The committee looked to two psychiatrists to interview each candidate for treatment by hemodialysis. The members of the Brooklyn committee agreed that candidates who were psychotic or actively addicted to a controlled substance should not be accepted.

Two Brooklyn psychiatrists, Dr. Franz Reichsman and Dr. Levy, engaged in the comprehensive evaluations of the 25 patients accepted into their hemodialysis unit between 1964 and 1968. The publication of their observations constituted the first psychosocial report regarding this group of patients.³ The ages of the 7 women and 18 men ranged between 15 and 56 years. Six patients were black, and 19 were white. Two were college graduates, and 10 were high school graduates. Five had completed high school, and five had less than an eighth-grade education. Each candidate for the program was interviewed by either of the two psychiatrists in two or three sessions of about 1 h. Sessions were recorded and transcribed. After acceptance into the program, each patient was seen by the initial interviewer frequently in brief sessions throughout the 4-year period of this study. Additional data were obtained at weekly conferences with the staff, social worker, and nurses. During the period of the study most mornings, one of the psychiatrists visited the hemodialysis unit to learn from the nurses and other professional personnel their observations regarding the physical and psychological status of the patients. As a result of the data gathered, three phases of adaptation to hemodialysis were observed: the honeymoon period, the period of disenchantment and discouragement, and the period of long-term adaptation.

The honeymoon period was marked by great improvement, physically and emotionally, of which the patients had clear and conscious awareness. It was accompanied by joie de vivre, confidence, and hope. A 44-year-old housewife said that she did not feel sick anymore. She said, I have hope. It is like being born again. A clear-cut honeymoon was observed in 16 of the 25 patients in the study.

In all 16 of the patients who experienced a clear-cut honeymoon, a distinct change in affective state was observed, in which the feelings of confidence and hope decreased markedly or disappeared. Instead the patients began to feel sad and helpless. This affective state lasted 3–12 months. There was a definite time relationship between the onset of this affective state and the planning or actual beginning of the resumption of productive work or household activity. This was termed the period of disenchantment and discouragement.

The period of long-term adaptation was characterized by patients arriving at some degree of acceptance of the shortcomings and complications of maintenance hemodialysis. The transition to this phase was slow in all patients. All patients experienced prolonged periods of contentment alternating with depression. During both these periods the most common psychological defense mechanism used was denial. Patients became keenly aware of their abject dependence on a machine, the procedure, and the staff of the hemodialysis unit. The willingness or relative willingness of patients to accept this dependence varied greatly and led to interest in the psychosocial aspects of dialysis, which this book considers.

Depression and anxiety were among the earliest of the psychosocial aspects to be investigated.⁴, 5 They are the most common psychological complications of end-stage renal disease (ESRD) and tend to be seen as a response to loss. ESRD patients have many losses. They have lost their good health and with it their independence. The patients are virtually tethered to a machine, a procedure, and a group of professional medical personnel. Most dialysis patients do not go back to the work they previously did and have less or no income compared with before initiation of dialysis. Recent findings demonstrate antidepressant medication may be helpful in alleviating both depression and anxiety in ESRD patients.⁵, 6

Dialysis patients often suffer from sexual dysfunction. In men, partial or total impotence is very common. Its cause is both physical and psychological. Several factors play a role in the emotional response. Most patients do not go back to the work they previously performed and endure a subsequent reduction in their income. A man’s sense of his masculinity is also attached to work activity. For many, unemployment takes a toll on his sense of being a man. In women, change in appearance may negatively affect the libido. Dialysis patients characteristically have a peculiar pallor. They often tend to look sick. A US national questionnaire of dialysis patients showed that men suffered more than women, both regarding libido and sexual performance.⁷

Uncooperativeness with various aspects of the dialysis regimen is among the most vexing problems for the staff.⁸ Unfortunately, it is very common.⁹ Why should these patients who owe their resurrection from near-death to reasonable function be insulting and otherwise oppositional to their caretakers’ recommendations? One of the answers to this question is the nature of many who develop chronic kidney failure. Those who are uncooperative with their diabetes and/or hypertensive regimen may be more prone to develop kidney failure than the patients who stick to their diet and adhere to what their physicians recommend. Those who have kidney failure are not a cross section of the general population. In addition, heroin addiction has its own kidney complications, adding further to those with kidney failure being more prone to uncooperativeness.

This book is written by an international group of professionals addressing the psychosocial factors dialysis patients face, their resulting psychological disorders, and what may be done to alleviate their problems.

References

1 Sapperstein M. In: Massry S.G., Sellers A.L., eds. Clinical aspects of uremia and dialysis. Springfield, IL: Charles C Thomas; 1976:53.

2 Scribner B.H. Introduction. In: Levy N.B., ed. Living or dying: Adaptation to hemodialysis. Springfield, IL: Charles C Thomas; 1974:xi.

3 Reichsman F., Levy N.B. Problems in adaptation to hemodialysis: a four year study of 25 patients. Arch Intern Med. 1972;130:850–865.

4 Kimmel P.L. Depression in patients with chronic renal disease: what we know and what we need to know. J Psychosom Res. 2002;53:951–956.

5 Mehrotra R., Cukor D., Unruh M., Rue T., Heagerty P., Cohen S.D., Dember L.M., et al. Comparative efficacy of therapies for treatment of depression for patients undergoing maintenance hemodialysis: a randomized clinical trial. Ann Intern Med. 2019;170(6):369–379.

6 Cukor D, Coplan J, Brown C, Friedman S, Newville H, Safier M, Spielman LA, et al. Anxiety disorders in adults treated by hemodialysis: a single-center study. Am J Kidney Dis 2008;52(1):128–36.

7 Levy NB. Sexual adjustment to maintenance hemodialysis and renal transplantation: national survey by questionnaire: preliminary report. Trans Am Soc Artif Intern Organs 1973;19:138–47.

8 Levy N.B. Complications of dialysis: psychonephrology to the rescue. Bull Menn Clin. 1984;48:237–250.

9 Kimmel P.L., Peterson R.A., Weihs K.L., Simmens S.J., Alleyne S., Cruz I., Veis J.H. Psychosocial factors, behavioral compliance and survival in urban hemodialysis patients. Kidney Int. 1998;54(1):245–254.

Chapter 2: Coping with chronic illness: The challenge of patients with renal disease

Daniel Cukora; Scott D. Cohenb; Paul L. Kimmelc    a Director, Behavioral Health, The Rogosin Institute, New York, NY, United States

b Associate Professor of Medicine, Division of Renal Diseases and Hypertension, Department of Medicine, George Washington University, Washington, DC, United States

c Clinical Professor of Medicine, Division of Renal Diseases and Hypertension, Department of Medicine, George Washington University, Washington, DC, United States

Abstract

Coping with any chronic illness is demanding, but there are many unique features of coping with chronic kidney disease. This chapter reviews the interrelationship between medical and psychiatric factors that influence patient’s adjustment to CKD, dialysis, and transplantation. The role of predisposing risk factors as a vulnerability to the development of negative reactions to medical illness is highlighted. Additionally, there is a review of the value of conceptual models in understanding why a particular patient might respond or behave in certain ways when faced with the stress of a chronic illness. Finally a model highlighting the confluence of pain, mood, sexual difficulty, and sleep dysfunction in patients with CKD is presented.

Keywords

Patients; Chronic illness; Disease; Sleep; Anxiety; Coping; Pain; Depression

The amazing pace of medical innovation has transformed chronic kidney disease (CKD) and specifically end-stage renal disease (ESRD), from an acute life-limiting illness to a chronic disease. While the recent history of nephrology has been devoted to developing life-saving and life-extending interventions, patients living longer with ESRD are in desperate need of life-enhancing interventions as well. With medicine’s renewed focus on patient-centered care and prioritizing quality of life, a sophisticated understanding of the psychosocial aspects of chronic kidney disease is warranted.

There are multitude of ways people respond to having a chronic illness, and many of these have been studied in great detail.¹ However, there are several factors that are unique to patients with CKD, as well as those undergoing treatment for ESRD that make the conditions distinctive, and therefore present challenges to the classic models of coping with a chronic illness.² According to 2018 USRDS data, 35.4% of incident ESRD patients received little or no pre-ESRD nephrology care, with over 80% of new dialysis patients starting treatment using a catheter.³ These findings highlight the lack of preparedness for ESRD care many patients have when they begin treatment. Being well prepared for dialysis eases the transition to renal replacement therapy (RRT)⁴–⁶ and has been associated with increased choice of self-care modalities.⁷ One of the unique patient-level variables that impacts adjustment to RRT is the path patients have taken before transitioning to end stage. There are clearly different psychosocial needs for patients who may not know they have kidney disease and are told in an emergency room that they urgently need dialysis and patients who have long been aware of their declining GFR and are well prepared for their RRT modality of choice. Other factors unique to the ESRD population include the significant disparity in treatment options. Patients with realistic options for preemptive kidney transplantation will have a substantially different adjustment than patients beginning conventional in-center hemodialysis.

The substantial treatment and symptom burden are also unique aspects of the patient’s experience of ESRD. The treatment burden is extremely high in all forms of RRT, with the exception of transplantation. Home modalities and in-center treatment force patients to permanently rearrange their schedules to accommodate treatment. In-center treatment typically requires 4 h of dialysis treatment three times a week, with travel and waiting time on both ends of each session. While home modalities offer more scheduling flexibility, they still require multiple treatments and are often performed daily. While other illnesses have high treatment burdens as well, they are often for a finite in-treatment time period. These scheduling demands will be present for renal patients for the rest of their lives or until transplantation. Beyond the time required for RRT, the symptom burden for patients is very high, with more than 50% of prevalent patients reporting over 18 difficult symptoms and treatment side effects.⁸, 9 The average number of pills a dialysis patient takes has been reported to be 19 a day.¹⁰ The amount of time RRT demands and the number of symptoms caused by uremia and/or its treatment create an unusually high treatment and symptom burden. The impact of the demand of treatment, treatment effects, medications, and side effects cannot be underestimated in this population.

All of the changes that are necessitated by being treated with dialysis are overlaid upon the typical challenges that a particular person may have been facing before their diagnosis.² Kidney disease does not impact all members of society equally (see Chapter 4), with members of minority groups and the financially disadvantaged being overrepresented in RRT populations. The increased importance of social determinants of health in minority populations with ESRD¹¹ can negatively impact overall health and mental well-being and serve as a further challenge to patients’ perceptions of health-related quality of life (HRQOL). Understanding the challenges our patients have experienced prior to initiating RRT and those exacerbated by the start of RRT is paramount in having a meaningful understanding of the patient and providing holistic care.

Models of the impact of comorbid psychiatric illness

The relationship between a patient’s mental health and kidney disease is complex and may also be bidirectional. Fig. 2.1 highlights three different mechanisms for this interaction. The first two models are unidirectional, with the third highlighting the reciprocal processes that can amplify the impact of comorbid psychiatric conditions on kidney health.

Fig. 2.1 Models of interaction between kidney disease and comorbid psychiatric conditions. (A) Depicts the pathway of a psychiatric reaction developing in response to kidney disease or its symptoms. (B) Depicts a psychiatric condition or its treatment leading to the development or progression of kidney disease. (C) Depicts the combination of psychiatric venerability with the additional strain of kidney disease yielding a psychiatric reaction.

In the first model, represented as A in the figure earlier, there is a clear pathway between kidney disease and the initiation of a new mental health difficulty. The uremic patient who is delirious, the dialysis patient who has started without proper preparation for ESRD and who has an adjustment disorder, and a patient with new onset of depression following a failed kidney transplant are all examples that may fit into this conceptual model. To illustrate this model of interaction, consider the following example.

Richa was a 72 year-old successful businessman who owned a boutique travel agency. He had been following his declining GFR over the past decade, and when it became evident that he was going to need RRT his immediate preference was for a pre-emptive transplant. His wife of 45 years was an apparent match, and they planned on having the procedure after the summer travel rush. Unfortunately, about a month before the scheduled procedure, his wife got an infection and had acute kidney injury. She was no longer a suitable donor. With his declining kidney function, Rich could not wait for another potential donor to be screened, and needed to start in-center hemodialysis (with a catheter). Rich tried to be optimistic and thought he would be able to run his business from his laptop while receiving treatment. However, he quickly realized that the combination of the fatigue, mental fog, and distracting environment all prevented him from effectively being at work for 3 days a week. Rich was used to providing his customers with concierge service and was deeply concerned that his business would not be able to survive with his limited availability. Rich quickly became despondent and lost all hope for future improvement. The sharp contrast between Rich’s expected lifestyle with a transplant and the reality of adjusting to life on in-center hemodialysis was overwhelming, and Rich experienced the first major depressive episode of his life.

The second conceptual model suggests that premorbid psychiatric illness contributes to the development or worsening of kidney disease. This interaction is perhaps best typified by renal lithium toxicity¹² following treatment for bipolar depression. Other examples of a psychiatric condition leading to kidney disease would also be a person with an illness anxiety disorder who consequently has avoided medical care for years or the person with a substance use disorder who experiences nephrotoxic effects.¹³ Additionally, the following example shows the complex ways personality and health belief systems can affect people’s health behaviors.

Miguel, a 55 year-old Hispanic man, first presented to the CKD clinic following referral from his primary care physician. Miguel had type 2 diabetes for more than fifteen years with a long history of hypertension. Despite the medical record indicating several medications to regulate his diabetes and blood pressure, Miguel stated that he does not take any of his medications. Miguel had never been in a long-term relationship and worked as an auto mechanic, often changing jobs every 3 to 6 months. His parents were both deceased and he had no children. His brother came with him to a follow-up appointment, and described Miguel as ‘stubborn’ and noted he had dropped out of school at 16 and had been bouncing between jobs and partners since then. Miguel said that he does not do anything he does not want to do, and he did not want to take pills for diabetes or high blood pressure. He said doctors told him he needed to start taking the pills 15 years ago and he didn’t listen then and he was still fine. Thy physician and nurse educator tried to explain the imminent need for RRT, but Miguel did not accept that things were as dire as described because he was still feeling well. Miguel did not show up to any follow-up appointments and the clinic found out that 8 months later he had an emergent dialysis start in a local emergency room.

The most common and complex example of the interaction between psychiatric illness and kidney disease is shown in Model C in the figure. In this depiction a person has some psychiatric vulnerability but is functioning before the start of dialysis. The healthcare transition and subsequent lifestyle changes act as a significant stressor and overwhelm the person’s ability to cope; previously existing unhealthy characteristics now develop into full blown psychopathology. Examples of this model include the patient who was always a planner but now that she is faced with a chronic illness cannot stop her unproductive worry and develops a generalized anxiety disorder. A person who always felt most comfortable at home but facing the additional physical and medical burdens the start of dialysis entails is now agoraphobic and no longer leaves the house without anxiety. The following example also highlights how the stress of ESRD treatment can exploit premorbid vulnerabilities and cause the development of psychopathology.

Grace is a 60 year-old woman who has recently begun in-center hemodialysis. She reports that she was a single mother who raised two children on her own, through considerable sacrifice and hardship. Her son and daughter each moved out of her house in their 30’s when they moved in with a significant other. For years, Grace has felt that she has been underappreciated by her children. She believes that they are good at receiving her love and care but quite poor at reciprocating. Despite these feelings Grace has never confronted her children and continues to support them both emotionally and financially. Grace explains that it is her role as mother to provide for them and that her kids get so angry with her whenever she tries to confront them with anything, so she does her best to avoid those types of conversations. Grace was particularly hurt when she was learning about her dialysis modalities and was considering some home options, but her children encouraged her to pursue in-center treatment. Grace stated, ‘They put it off as if it was for me, by saying I would be less lonely in-center, but I can’t help but think they preferred it because it was less work for them.’ With every challenge Grace’s dialysis experience brought, she felt more resentful and more depressed. While Grace’s depression was certainly precipitated by her dialysis start, the precursors of the depression lay in her attachment and personality styles. Most importantly, treatment for Grace’s depression should not only focus on the here and now, but it would need to account for her interpersonal style and her relationship with her children.

There has been extensive scientific discussion regarding the risk factors for the development of depression.¹⁴, 15 Fig. 2.2 depicts a comprehensive model of vulnerabilities to the development of depression for the patient with advanced CKD. The figure highlights biological, psychological, and social factors, and emphasizes the role reaction to illness-related variables can play. In the example of Grace, the psychological and social risk factors she had (e.g., coping style and social support) served as a foundation for her isolation and resentment.

Fig. 2.2 Model of risk for development of depression.

Coping with chronic illness

The human reaction to facing the stress of a chronic illness condition is quite diverse, including biological and emotional responses. The concept of stress has evolved from Selye’s initial description¹⁶ to McEwen’s concept of allostasis¹⁷ or ability to achieve stability through change.² Several styles of response have been associated with increased allostatic disruption, highlighting the interplay between a person’s behavioral and emotional response to illness or threat, and the associated physical changes.¹⁸ Individual differences in the perception of stress are a key factor in individual responses to similar stressors. To understand a person’s reaction to illness, we need to understand their ability to respond on a biological and psychological level to the illness threat. Said differently, just as age, gender, genetics, and developmental history are essential in understanding allostatic dysregulation, personality, psychological style, and illness perceptions may play equally important roles in predicting that person’s response to their illness. The person’s physical and psychological dispositions combine to affect the ability to respond or cope to the illness demands.

There is a substantial literature describing adaptive and nonadaptive strategies.¹, 19, 20 There is a particularly rich literature in the field of psychooncology,²¹–²³ but only small-scale studies specific to ESRD populations.²⁴–²⁶ While there are many models that have been suggested for understanding coping with chronic illness,²⁷ one theory that has gotten a great deal of scientific attention is the health belief model.²⁸, 29 It has been applied to a variety of health conditions and has largely been supported by empirical research.³⁰ Very simply stated the model suggests that people’s health behaviors are driven by their perceived susceptibility to the particular condition, the perceived severity of the condition, and the perceived barriers and benefits of a particular health behavior. According to the health belief model, peoples’ actions are predicted by the salience of the threat to them and the personal meaning of the consequent health action. This can be a powerful model for understanding why some people have neglected the treatment of their hypertension, placing them at increased risk for the development or progression of renal disease. Asking patients how real the threat of kidney disease seemed to them at the time and what the meaning is behind following medical advice for their antihypertensives can lead the clinician to a fuller understanding of how past decisions were made. As an example, if a patient knew little about kidney disease or the necessity of kidney function for good health and failed to see how blood pressure and kidney function were related, the importance of kidney disease might be deemed to be quite low, and they may have allocated their efforts to other more pressing conditions or concerns. Another helpful construct in understanding patient decision making is Maslow’s hierarchy of needs.³¹ Despite being criticized for lacking empirical support,³² Maslow’s construct can be a useful heuristic for understanding which priorities people choose to act on. Maslow suggested that people focus on their most basic needs for living before they can consider higher-order goals. As an example to a person who is hungry and does not have enough food to eat, the idea of vaccination against future illness may not resonate, as the basic need for food consumes all of their attention, and more distal, albeit potentially life-saving, goals appear irrelevant. The following example illustrates the relevance of these constructs to patients with ESRD.

Diane is a 67 year old African American woman who has been on dialysis for the past 4 years. In many ways, she is a model patient, never missing a treatment session and always interacting pleasantly with all staff. As part of an annual review, the social worker noted that Diane had not been listed for transplantion, and approached the topic with her. Diane shared that she would very much like to get a transplant, but she knew the wait would be several more years, and she did not have the time to go through the intensive pre-transplantion medical evaluations. Diane revealed that her adult son who lived with her had a serious mental illness, and that she spends almost all of her non-dialysis time caring for him or escorting him to his appointments. They were recently told by their landlord that they needed to move, but she was contesting this in court. As a result of these legal proceedings her and her son’s government benefits were being reviewed. All these issues (housing, financial stability) were so basic that Diane needed to prioritize them. From the dialysis center’s perspective, getting listed is of clear value, but for Diane, the thought of the distal goal of transplantation was not powerful enough to pull her attention or time from the proximal core issues she currently faced. The salience of the need to get on the transplant list was not just not a priority for her. The social worker needs to respect that the timing was not right to press the issue further.

The real world ESRD patient: Complex interrelationships

It can be tempting to identify a particular issue or diagnosis and begin to treat that specific condition without considering the broader context of that symptom. For example, if a patient reports sleep disturbance, it may be tempting to think of that condition in isolation and not consider it a symptom of either another psychological (e.g., depression) or physiological (e.g., pain) condition. Often ESRD patients present with a multitude of symptoms, and it is difficult to determine if they share a common etiology or are separate conditions and whether they have physiologic or psychic origins or are a combination of the two.³³, 34 Patients rarely present with a clear distinct psychosocial issue. Often a cascade of negative symptoms that spans a broad array of diagnostic categories is present.

Each of these conditions will be discussed in greater detail in this volume, but the symptoms of pain (Chapter 10), sexual difficulty (Chapter 12), sleep disturbance (Chapter 9), anxiety (Chapter 8), and depression (Chapter 7) are interrelated and often present comorbidly. Whenever thinking about symptoms that are of complex etiology, it is helpful to distinguish between factors that might have originally caused the symptom and the factors that have gone on to perpetuate the symptom developing into an ongoing problem. In many cases uremia, dialysis treatment, or medication side effects can cause the initial problem, but behavioral and psychological factors reinforce perpetuation of the symptom. In other words, regardless of what triggered the symptom initially, an effective treatment must seek to remove those psychological and behavioral factors that currently maintain the problem. An understanding of the complex interrelationship of these symptoms and factors will help the clinician understand the patient experience and better position practitioners to intervene on the key symptoms that may be driving the particular cascade for a specific patient.

Pain

The pain experience of the dialysis patient has been described,³⁵, 36 but there is limited research on meaningful interventions in this population.³⁷ Cognitive behavioral therapy has been demonstrated to be an effective tool for pain management in a variety of pain conditions and patient populations.³⁸–⁴⁰ It can be helpful to understand the cycle that promotes and maintains pain and pain-related behaviors.

Fig. 2.3 highlights the chain of events that can perpetuate a vicious cycle of pain. If a person has a pain experience, such as pain in their legs or feet while walking, that may well lead them to avoid the activity that has caused the pain. This in turn may lead to increased fatigue and eventual atrophy. Simultaneously, this avoidance of pain may also lead to pain-focused awareness and hypervigilance, a state characterized by thinking about pain and planning around it. Paradoxically the more concerned people become with avoiding pain, the more sensitive to pain they may become, and they can develop increased pain sensitivity.⁴¹–⁴³ This increased pain sensitivity then feeds back to pain and the subsequent avoidance and hypervigilance. This cycle can also lead to symptoms of anxiety and depression.⁴⁴–⁴⁶

Fig. 2.3 Vicious cycle of pain symptoms.

Sexual difficulty

Sexual difficulty is commonly reported in patients with CKD⁴⁷ and in those being treated with hemodialysis⁴⁸ and is prevalent in both men⁴⁹ and women.⁵⁰ The etiology of the difficulty may be physiologically related to uremia or other underlying medical conditions, such as diabetes or atherosclerotic vascular disease, but sexual dysfunction can set off a vicious cycle that ultimately decreases intimacy and exacerbates the sexual difficulty (see Fig. 2.4).

Fig. 2.4 Vicious cycle of sexual symptoms.

Even an isolated sexual performance issue can trigger anticipatory anxiety about the next sexual experience, which may lead to avoidance of sexual activity. The lack of sexual contact can foster decreased intimacy between partners, which may increase feelings of isolation and low mood, which can then cause additional sexual performance issues.

Sleep

Poor sleep has been well documented in patients who are treated with hemodialysis.⁵¹, 52 A sleep disturbance can set off a series of events that can trigger other symptom constellations and further contribute to poor sleep. In Fig. 2.5 a pathway is laid out in which a night of poor sleep triggers feelings of tiredness and fatigue, which can lead to daytime napping. This is particularly true for patients receiving dialysis, as they are stationary and often seated or reclining for long portions of the day.⁵³ Daytime napping can cause decreased sleep satisfaction, difficulty falling asleep the next night, and if this cycle continues, frustration, exhaustion, and depression.

Fig. 2.5 Vicious cycle of sleep symptoms.

Anxiety

Similarly, symptoms of anxiety are quite common in ESRD patients.⁵⁴, 55 Anxiety can express itself through a variety of different ways, but the core features of excessive worry or fear are the driving force behind the emotional disturbance. Fig. 2.6 depicts a model pathway of anxiety symptoms leading to avoidance and then returning to exacerbate the initial anxiety. Anxiety can begin as a concern over a symptom or a worry about a future event. This worry causes the person to be hypervigilant and avoid activities or situations that might trigger the symptom. While this brings short-term relief from the anxiety, it serves to reinforce the association between danger and the symptom. Avoidance of potentially anxiety-causing situations can cause people to become isolated, depressed, and develop increased sensitivity to the anxiety, so even lesser symptoms or worry causes more distress. This can then lead a person to feeling down and even more susceptible to further anxiety.

Fig. 2.6 Vicious cycle of anxiety symptoms.

Depression

Depression is prevalent in patients with ESRD and has been associated with negative health outcomes including mortality.⁵⁶ Fig. 2.7 demonstrates a model in which initial low mood can lead to activity avoidance, which leads to a lack of positive reinforcements in one’s life, which promotes isolation and negative thinking and further perpetuates the thoughts and behaviors endemic to depression.

Fig. 2.7 Vicious cycle of depression symptoms.

The commonality of the components of the cycles that serve to reinforce and perpetuate the initial symptoms across the different conditions highlights the ease with which these symptoms can serve as triggers for other symptoms. In clinical practice, it is uncommon to see a patient who has only one set of symptoms; it is more typical to see patients with components of many of these constellations who may be in the midst of several vicious cycles at any one moment.

The following case is meant to highlight the complexity of addressing psychosocial issues and how multicomorbidity is the rule, not the exception.

Tyrell is a 63 year old African American man who has been on in-center hemodialysis for 6 months. His transition to dialysis was relatively smooth, as he had good nephrology care and education for several years prior to starting, and strong support from his wife of nearly 40 years. One weekend, Tyrell was a bit more lax about his fluid restriction and consequently more fluid than usual needed to be removed at his next dialysis session. Toward the end of that session, Tyrell experienced moderate leg cramps for the first time. That night his leg cramps were quite severe and he was in moderate pain and barely slept. The following day, Tyrell was groggy and tired and slept for a few hours. At his next dialysis session he discussed his issue with his nephrologist, who advised him that it was probably due to the fluid overload, but if the cramps persisted to let her know. Tyrell became very focused on the pain in his legs and soon found the last half hour of dialysis treatments to be unbearable due to his concern over the imminent pain, and the very beginnings of the cramps that he would feel. His sleep cycle was totally disturbed, as he was now sleeping during dialysis and having difficulty falling asleep at his normal bed time. He had taken to sleeping in the guest room, so as not to disturb his wife. After about a month, Tyrell had moved into the guest room, was feeling very distant from his wife, was anxious about his pain, was pessimistic about his future and overall had a negative sense that he was not coping well with dialysis. (Fig.