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«The Experience and Self-Management of Fatigue in Adult Hemodialysis Patients by Ann Elizabeth Horigan Nursing Duke University Date:_ Approved: _ ...»

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The Experience and Self-Management of Fatigue in Adult Hemodialysis Patients

by

Ann Elizabeth Horigan

Nursing

Duke University

Date:_______________________

Approved:

___________________________

Julie Barroso, Supervisor

___________________________

Diane Holditch-Davis

___________________________

Susan Schneider

___________________________

Sharron Docherty

Dissertation submitted in partial fulfillment of

the requirements for the degree of Doctor of Philosophy in Nursing in the Graduate School of Duke University ABSTRACT The Experience and Self-Management of Fatigue in Adult Hemodialysis Patients by Ann Elizabeth Horigan Nursing Duke University Date:_______________________

Approved:

___________________________

Julie Barroso, Supervisor ___________________________

Diane Holditch-Davis ___________________________

Susan Schneider ___________________________

Sharron Docherty An

Abstract

of a dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Nursing in the Graduate School of Duke University Copyright by Ann Elizabeth Horigan Abstract Fatigue is a common and debilitating symptom for adult patients with end-stage renal disease on hemodialysis and has been associated with decreased survival and quality of life. Patients on hemodialysis must find ways to manage their fatigue and mitigate its effects on their lives. Currently, there is no description of the experience of fatigue for American hemodialysis patients, nor is there any description of the ways in which they manage their fatigue. The purpose of this qualitative descriptive work was to describe the experience and self-management of fatigue as well as how fatigue changes over time from one dialysis session to the next. Several themes were identified which included: the nature of fatigue, management of fatigue, consequences of fatigue, and factors associated with fatigue. Further, hemodialysis patients experience two types of fatigue, post-dialysis fatigue only, fatigue that occurs acutely after the dialysis session and resolves after sleep or rest, and continuous fatigue, a persistent, underlying fatigue that patients experience at all times and worsens after the dialysis session usually requiring a prolonged period of recovery.

–  –  –

This work is dedicated to mom and dad who supported me in every way imaginable; to Jim and John who reminded me that it’s not always about me; to The Babies, my favorite dogs, Atilla, Chewy, Teddy, Taffy and Chi Chi who walked every step of the way with me, never asking questions, never complaining, and always ready to give me kisses when I needed them the most; and to Wally and Hazel who couldn't be here when I finished my "report".

–  –  –

List of Tables

List of Figures

Acknowledgements

–  –  –

Table 1: Fatigue Instruments Used in Research with Hemodialysis Patients

Table 2: Researchers who Measured the Presence or Absence of Fatigue in Hemodialysis Patients

Table 3: Researchers who Created a Fatigue Instrument

Table 4: Factors associated with fatigue in dialysis patients

Table 5: Interview Questionnaire

Table 6: Demographic characteristics……………………………………………………66 Table 7: Sample interview questions…………………………………………………….91 Table 8: Demographic characteristics……………………………………………………96

–  –  –

Figure 1: Sample fatigue diary……………………

Figure 2: Continuous fatigue with a spike after dialysis

Figure 3: Continuous fatigue with a plateau after dialysis…………………................. 100 Figure 4: Fatigue levels over 18 hours in patients with post-dialysis fatigue only……..103 Figure 5: Conceptual model of fatigue in dialysis patients prior to dissertation study... 119 Figure 6: Conceptual model of fatigue in dialysis patients after dissertation study....... 121

–  –  –

Thank you to my funding organizations, the Duke University School of Nursing, National Institute of Nursing Research and the American Nephrology Nurses' Association, for without them, this work would not have been possible.

Thank you to: Dr. Julie Barroso for five years of hard work and dedication, for holding my feet to the fire, for bringing me in from the ledge and for having a sense of humor when I needed it the most. Who knew it is as painful for the Chair as it is for the student? To Dr. Diane Holditch-Davis for mentoring the mentor and the mentee. To Dr.

Susan Schneider and Dr. Sharron Docherty for reading, brainstorming and listening.

Thank you to Amanda Purdham and all of the staff at Davita for helping me recruit participants and making me feel welcome.

–  –  –

Fatigue is one of the most common symptoms that patients with chronic illness experience (Kirshbaum, 2012). It is thought to be under-recognized and under-treated (Ahlberg, 2005), most likely due to its insidious, invisible nature. Patients with end-stage renal disease (ESRD), a common, chronic illness that affects over 525,000 people in the United States (National Institute of Diabetes and Digestive and Kidney Diseases [NIDDK], 2009), identify fatigue as one of the most frequent symptoms with which they contend (Jablonski, 2007; Merkus, Jager, Dekker, de Haan, Boeschoten et al., 1999;





Parfrey, Vavasour, Henry, Bullock, & Gault, 1988; Weisbord, Fried, Arnold, Fine, Levenson, Peterson et al., 2005), with a prevalence ranging from 60% to 97% (Bossola, Luciani, & Tazza, 2009; Cardenas & Kutner, 1982; Chang, Hung, Huang, Wu, & Tsai, 2001; Letchmi et al., 2011; Murtagh, Addington-Hall, & Higginson, 2007; Parfrey et al., 1988; Weisbord et al., 2005). Patients with ESRD require renal replacement therapy, dialysis (hemodialysis or peritoneal dialysis) or a kidney transplant, for survival. Patients on hemodialysis account for approximately 92% of the overall dialysis population and they may experience fatigue as a symptom of ESRD, or as a result of the hemodialysis treatment itself (Sklar, Riesenberg, Silber, Ahmed, & Ali, 1996). Fatigue in patients on hemodialysis has been associated with lower quality of life (Jhamb, Weisbord, Steel, & Unruh, 2008; Weisbord, Carmody, Bruns, Rotondi, Cohen et al., 2003; Yong, Kwok, Wong, Suen, Chen et al., 2009) and with lower survival rates (Jhamb, Argyropoulos, Steel, Plantinga, Wu et al;., 2009).

Research about the experience of fatigue in this population, which includes the person’s perceptions, evaluations, and responses to fatigue (Dodd, Janson, Facione, Faucett, Froelicher et al., 2001), is limited. We have little information regarding the patterns of fatigue that exist in patients on hemodialysis. We do not know how patients manage their fatigue or how to most effectively intervene. A detailed description of the fatigue experience in patients on hemodialysis and identification of patterns of fatigue, such as how often it occurs and when it worsens, could help establish a base for the development of approaches to help lessen the effects of fatigue. Treatments such as exercise (Fitts, 1997; Wilson, Malahy, Scialabba, & Woodrow, 2006) and management of anemia with erythropoietin–stimulating agents (Ossareh, Roozbeh, Krishnan, Liakopoulos, Bargman et al., 2003) have been used to treat fatigue in patients on hemodialysis. However, these interventions are not effective for all patients on hemodialysis who have fatigue (Williams, Crane, & Kring, 2007; Williams,Stephens, McKnight, & Dodd, 1991) and may even be dangerous for some (Singh, Szczech, Tang, Barnhart, Sapp et al., 2006).

Like patients with other chronic illnesses, patients with ESRD who are on hemodialysis assume much of the burden for managing their illness and symptoms, such as fatigue (Curtin & Mapes, 2001; Holman & Lorig, 2000; Thomas-Hawkins & Zazworsky, 2005). While there have been significant improvements in the quality of care for patients on hemodialysis (NIDDK, 2011), morbidity and mortality rates remain high and life expectancy is limited (NIDDK, 2011). Symptom management is an important aspect of self–care for patients on hemodialysis because engaging in effective management techniques leads to longer lives (Curtin, Mapes, Petillo, & Oberley, 2002;

Schatell, Thompson, & Oberley, 1999). Self-management of fatigue is also important for improving quality of life for patients on dialysis. However, little information exists on how hemodialysis patients manage their fatigue, and how successful they are (Curtin & Mapes, 2001). Studying the experience and self–management of fatigue in patients on hemodialysis is critical to the development of techniques that will help ameliorate or even alleviate fatigue for these patients.

Therefore, the specific aims of this study were to:

1. Describe the experience of fatigue, including the participant’s perceptions, evaluations, and responses to fatigue, for patients on hemodialysis.

2. Describe how patients on hemodialysis manage fatigue, including management strategies and perceived effectiveness of the strategies.

3. Describe how fatigue changes over time from one dialysis session to the next.

A qualitative study using a longitudinal descriptive study design addressed the above aims. Patients on hemodialysis were recruited from a nephrology practice in the southeast United States. Semi-structured interviews were conducted to gain an in-depth understanding of the experience and self-management of fatigue. Patients were asked to keep a diary of their fatigue and self-management practices beginning on a dialysis day and ending on the next dialysis day, 48 hours later, and again over a 72-hour period which provided information regarding how fatigue changed over time from one dialysis session to the next.

Findings from this study are presented in chapters two through four followed by a conclusion chapter. In chapter two, I present the state of the science on the factors associated with fatigue in patients on hemodialysis, a paper that is in press in the Journal of Pain and Symptom Management. I have obtained permission to reprint this article in my dissertation. In chapter three, the findings from my exploratory qualitative descriptive study are presented. Four themes emerged from the data I collected and analyzed; these themes describe the experience and self-management of fatigue in hemodialysis patients.

Themes found in the data include: the nature of fatigue, management of fatigue, consequences of fatigue and factors associated with fatigue. In chapter four, a comparison of two groups of dialysis patients with fatigue is made. These groups emerged as data were analyzed and include a group of patients who experienced post-dialysis fatigue only and a group who experienced continuous fatigue. Data from those with post-dialysis fatigue only -- those who have fatigue only after their dialysis sessions-- were analyzed separately from the whole group to find themes in the data that were specific to this group. These findings were compared to the findings from participants with continuous fatigue: those who experience a persistent fatigue daily that is exacerbated after their dialysis session. Finally, in chapter five, I elaborate on areas of the dissertation work that were not discussed in the manuscripts including: sampling in qualitative work, age versus illness effects, implications for policy, and preliminary theorizing based on my model of fatigue before and after my study was completed.

–  –  –

As ESRD is increasing in incidence and prevalence, it is important to understand the current knowledge regarding fatigue in this population. The following review of the literature begins with a description of the experience of end-stage renal disease, including disease progression and changes in health and lifestyle. The possible causes of fatigue in patients on dialysis, and the definition and measurement of fatigue as they relate to patients on hemodialysis, are discussed. Current treatments for fatigue are described, including a discussion of their utility in this population. Lastly, the experience of fatigue and its self-management in patients with chronic illness and patients with end-stage renal disease on dialysis are discussed.

Experience of End Stage Renal Disease Chronic kidney disease. Chronic kidney disease has an illness trajectory in which there is a progressive deterioration of kidney function that eventually results in end-stage renal disease requiring dialysis or kidney transplant. Chronic kidney disease is often unpredictable and sometimes patients do not feel ill as the disease progresses to ESRD (Iles-Smith, 2005). Patients who experience symptoms of kidney failure often feel tired, have a decreased appetite, trouble concentrating, swelling in their feet and hands, muscle cramps, itching, and either a decrease or increase in urination (Daugirdas, Blake, & Ing, 2001). When chronic kidney disease transitions to end-stage renal disease, the glomerular filtration rate has dropped below 15 mL/min, and the kidneys have ceased to function properly, necessitating the initiation of dialysis. Selection of dialysis modality, hemodialysis or peritoneal dialysis, depends largely upon physician recommendation, patient preference, and the patient’s clinical and social status (Mendelssohn, Mullaney, Jung, Blake, & Mehta, 2001; Shahab, Khanna, & Nolph, 2006; Stack, 2002; Thamer, Hwang, Fink, Sadler, Wills et al., 2000). Since hemodialysis patients account for approximately 92% of the dialysis population (NIDDK, 2009), this research will focus on hemodialysis patients. Hemodialysis involves the removal of wastes and excess fluid from the blood through a type of vascular access (Martchev, 2008; Muringai, Noble, McGowan, & Channey, 2008). Blood is pumped through a dialyzer that has a semipermeable membrane that allows the diffusion of solutes and excess fluid from the blood (Martchev, 2008).



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