Quality of life, fatigue, and activity in Australians with chronic kidney disease: A longitudinal study

TLDR: Over a 12 month period, a significant change was found for health-related quality of life in relation to role-physical, vitality, mental health/emotional well-being, and overall mental health, however, activity levels did not significantly improve during that time.

Abstract: In this study we investigated the relationship between health-related quality of life, fatigue, and activity levels of people with anemia secondary to chronic kidney disease over a 12 month period following the introduction of an erythropoietin-stimulating agent. Using a longitudinal repeated-measure design, 28 people with chronic kidney disease completed the Short Form-36 Health Survey, Human Activity Profile and Fatigue Severity Scale at the commencement of an erythropoietin-stimulating agent, and then at 3, 6, and 12 months. Over a 12 month period, a significant change was found for health-related quality of life in relation to role-physical, vitality, mental health/emotional well-being, and overall mental health. However, activity levels did not significantly improve during that time. Renal nurses in dialysis units and chronic kidney disease outpatient clinics have repeated and frequent contact with people with chronic kidney disease over long periods of time, and are in an ideal position to routinely assess fatigue and activity levels and to institute timely interventions to optimize health-related quality of life and independent activity.

Figures

Table 4 Human Activity Profile, Dyspnoea and Fatigue mean and standard deviation scores

Table 1 Number of patients at each time period

Table 5 Correlations between fatigue, physical activity, and breathlessness with SF-36 physical health and mental health over time

Table 2 SF-36 means, standard deviations and repeated measures ANOVA scores

Table 3 Correlations between SF36 Question 1 (Q1), HAP, Dyspnoea and Fatigue

Full text

Quality of life, fatigue, and activity in Australians with
chronic kidney disease: A longitudinal study
Author
Bonner, Ann, Caltabiano, Marie, Berlund, Lois
Published
2013
Journal Title
Nursing & Health Sciences
Version
Accepted Manuscript (AM)
DOI
https://doi.org/10.1111/nhs.12038
Copyright Statement
© 2013 Wiley Publishing Asia Pty Ltd. This is the peer reviewed version of the following
article: Quality of life, fatigue, and activity in Australians with chronic kidney disease: A
longitudinal study, Nursing and Health Sciences, 2013, 15 (3), pp. 360-367, which has been
published in final form at https://doi.org/10.1111/nhs.12038. This article may be used for non-
commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving (http://
olabout.wiley.com/WileyCDA/Section/id-828039.html)
Downloaded from
http://hdl.handle.net/10072/400124
Griffith Research Online
https://research-repository.griffith.edu.au

1
Bonner, A., Caltabiano, M., & Berlund, L. (2013). Quality of life, fatigue, and activity in Australians with chronic kidney
disease: A longitudinal study. Nursing & Health Sciences, doi: 10.1111/nhs.12038
TITLE
Quality of life, fatigue, and activity in Australians with chronic kidney disease: A
longitudinal study
AUTHORS
Professor Ann Bonner PhD, MA, B.App.Sc(Nurs), RN, MRCNA
School of Nursing
Queensland University of Technology
Victoria Park Rd
Kelvin Grove QLD 4059
Australia
Email: ann.bonner@qut.edu.au
Associate Professor Marie Caltabiano PhD, BA(Hons)
School of Psychology
James Cook University
Cairns QLD 4870
Australia
Ms Lois Berlund
Renal Unit
Cairns Base Hospital
Citation
Bonner, A., Caltabiano, M., & Berlund, L. (2013). Quality of life, fatigue, and activity in
Australians with chronic kidney disease: A longitudinal study. Nursing & Health Sciences,
doi: 10.1111/nhs.12038

2
Bonner, A., Caltabiano, M., & Berlund, L. (2013). Quality of life, fatigue, and activity in Australians with chronic kidney
disease: A longitudinal study. Nursing & Health Sciences, doi: 10.1111/nhs.12038
ABSTRACT
Aims and objectives
This study sought to determine the relationship between health related quality of life
(HRQoL), fatigue and activity levels of people with anaemia secondary to chronic kidney
disease (CKD) over a 12 month period following the introduction of an erythropoietin
stimulating agent (ESA).
Background
CKD occurs in five stages and it is a complex chronic illness which severely impacts on an
individual’s HRQoL, and ability to perform everyday activities. Fatigue is also a common
symptom experienced by people with CKD.
Design and methods
Using a longitudinal repeated measures design, 28 people with CKD completed the SF-36,
human activity profile and fatigue severity scale at the commencement of an ESA and then at
3, 6 and 12 months.
Results
Over a 12 month period, people reported a significant change in HRQoL in relation to role
physical, vitality, mental health/emotional well-being and overall mental health. However
activity levels did not significantly improve during that time. Both the amount of
breathlessness and level of fatigue were highest at baseline and declined over time. Both
fatigue and breathlessness were correlated with less reported general health over time.
Conclusion
Renal nurses, in dialysis units and CKD outpatient clinics, have repeated and frequent contact
with people with CKD over long periods of time, and are in an ideal position to routinely
assess fatigue and activity levels and to institute timely interventions. Early detection would
enable timely nursing interventions to optimise HRQoL and independent activity.
Relevance to Clinical Practice
Drawing on rehabilitation nursing interventions could assist renal nurses to minimize the
burden of fatigue and its impact on simple everyday activities and a person’s quality of life.
These interventions are important for people who are living at home and could assist in
lowering the burden on home support services.
Keywords
Renal failure, everyday life, fatigue, renal nursing, chronic illness, Australia
Acknowledgements
Authors gratefully acknowledge the assistance of the research participants.
Contributions
Study design: AB, MC; data collection: AB, LB; data analysis: MC, AB; manuscript
preparation: AB, MC, LB

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Bonner, A., Caltabiano, M., & Berlund, L. (2013). Quality of life, fatigue, and activity in Australians with chronic kidney
disease: A longitudinal study. Nursing & Health Sciences, doi: 10.1111/nhs.12038
INTRODUCTION
Chronic kidney disease (CKD) is rapidly increasing globally (Zhang & Rothenbacher 2008),
and is predicted to affect 11.5% of the adult population (23 million people) in the United
States (Coresh et al. 2011), and other countries have detailed similar or higher prevalence
estimates (AIHW 2009, White et al, 2010). CKD is classified into five stages of severity,
with stage 5 also referred to as end stage kidney disease (ESKD) where survival may be
dependent on renal replacement therapy (dialysis & transplantation) (Vassalotti et al. 2007).
No matter what the stage of CKD, people experience a range of symptoms that affect all body
systems (Murtagh et al. 2007), and they are required to invest considerable time in managing
their health, including modifying their diet, managing numerous medications, undergoing
renal replacement therapies (if required) and attending medical and hospital appointments.
CKD, its treatment and concomitant complications also impact significantly on a person’s
lifestyle, family responsibilities, their ability to work, and financial status. The impact of
CKD and its treatment on physical, emotional, social and overall HRQoL is, therefore,
profound.
At least 45% of people with CKD, particularly those who are in stages 4 and 5, develop
anaemia (Gandra et al. 2010). According to Lasch, Evans and Schatell (2009) people with
anaemia due to CKD commonly report decreased energy, tiredness, shortness of breath and
weakness. In addition, anaemia in CKD contributes to significant co-morbid complications
such as left ventricular hypertrophy, congestive heart failure, and ischaemic heart disease
(Brattich 2007, Schimid & Schiffl 2010). As a consequence, people have increased
hospitalizations and a shorter life expectancy (Palmer et al. 2010, Voormolen et al. 2010). An
erythropoietin stimulating agent (ESA) is frequently prescribed to increase haemoglobin
levels in order to reduce these complications (Rathi et al. 2010, Schmid & Schiffl 2010,
Mikhail et al. 2011). In addition there is some evidence to suggest that increasing
haemoglobin levels from between 110 to 120 g/L (11-12 g/dl) in people with CKD stages 3-5
will lead to improvements in patient reported HRQoL (Finkelstein et al. 2009, Hansen et al.
2009).
BACKGROUND
Fatigue and CKD
Fatigue is a complex, subjective experience (McCann & Boore 2000) and is reported by 70-
97% of people with CKD (Murtagh et al. 2007, Jhamb et al. 2008, Bossola et al. 2011).
Despite advances in renal health care, fatigue remains ranked as one the most troublesome
symptoms for people with CKD (Danquah et al. 2010). Factors associated with the fatigue
experienced in CKD include: prescribed medications and their side effects; nutritional
deficiencies; physiological alterations, particularly abnormal urea and haemoglobin levels;
psychological factors such as depression, sleep dysfunction and those associated with
haemodialysis treatment (low dialysate sodium and excessive ultrafiltration) (Welch 2006).
Fatigue has been extensively examined, particularly in haemodialysis patient populations
(McCann & Boore 2000, Jablonski 2007, Danquah et al. 2010). Not surprisingly fatigue due
to CKD has a considerable effect on a person’s HRQoL and is viewed as being more
important than survival by some patients (Jhamb et al. 2008). Using the fatigue severity
scale, Bonner et al. (2008) found people with varying stages of CKD who were prescribed an
ESA for anaemia reported higher fatigue levels than those who were not prescribed an ESA.
These findings provided the impetus for this study.

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Bonner, A., Caltabiano, M., & Berlund, L. (2013). Quality of life, fatigue, and activity in Australians with chronic kidney
disease: A longitudinal study. Nursing & Health Sciences, doi: 10.1111/nhs.12038
Activity and CKD
There is a reduced capacity of people with CKD to engage in activities of daily living
including exercise activity (Bonner et al. 2009, White et al. 2009) which is likely to be due to
a number of factors including anaemia, fatigue, lengthy treatment commitments, and
debilitating co-morbid conditions. While ESA has profoundly improved the potential for
higher activity levels in people with CKD (Painter et al. 2002, Gandra et al. 2010) there has
not been a corresponding increase in activity levels amongst this population (Painter et al.
2011). Increasingly the promotion of activity including exercise programs has been argued as
an integral component of rehabilitation programs towards the optimisation of health for
people with CKD (Kosmadakis et al. 2010). While there have been some reports of
successful increase in levels of activity, there has been little adoption of these interventions
into routine nursing care (Bennett et al. 2010). Although there are several methods to
measure activity and/or exercise capacity in people with CKD (Koufaki & Kouidi 2010), the
Human Activity Profile (HAP), developed by Fix and Daughton (1988) has been
demonstrated to be a valid and reliable instrument for assessing the levels of human activity
(Wellard 2003, Davidson & de Morton 2007, Bonner et al. 2009).
Health Related Quality of Life and CKD
It is no longer adequate to measure only morbidity and mortality associated with chronic
disease; HRQoL is particularly important in determining health outcomes for people with
CKD (Soni et al. 2010). Survival is longer in people with a better HRQoL, and better health
status and less morbidity are associated with higher HRQoL (Untas et al. 2011). There are
several instruments available for measuring HRQoL in people with CKD, and the Medical
Outcomes Study 36-Item Short-Form Health Survey (SF-36) and the Kidney Disease Quality
of Life [KDQOL], a renal specific version of the SF-36, are the most frequently used (Lowrie
et al. 2003, Unruh et al. 2005). Finkelstein et al. (2009) used the KDQOL to examine the
relationship between different haemoglobin levels and HRQoL in 1200 people with CDK
stages 3-5, and reported that greater improvements in quality of life occurred when
haemoglobin levels were higher. Using the SF-36, Hamilton and Hawley (2006) found that a
nurse-led anaemia clinic for patients with CKD significantly improved levels of quality of
life three to six months later.
Surprisingly the relationship between haemoglobin, HRQoL and fatigue levels and their
impact on actvity levels has not been reported. Given the increasing involvement of nurses in
the aggressive symptom management of people with CKD, particularly as Nurse Practitioners
(Holcomb 2005, Douglas & Bonner 2011), nursing research examining HRQoL, activity and
fatigue is warranted. This is important for renal units where nursing roles are expanding to
include advanced practice functions. In addition, increased knowledge about these health
indicators has the potential to guide the development of nurse-led interventions specifically
targeted at early symptom identification and management.
STUDY
The aims of this study were to:
 Determine the HRQoL, activity and fatigue levels of people with anaemia secondary to
CKD.
 Compare HRQoL, activity and fatigue levels of people with anaemia secondary to CKD
and in normal healthy population.
 Determine the changes in HRQoL, activity and fatigue over twelve months following the
introduction of ESA.

Frequently asked questions

Q1. What are the contributions mentioned in the paper "Quality of life, fatigue, and activity in australians with chronic kidney disease: a longitudinal study" ?

This is the peer reviewed version of the following article: Quality of life, fatigue, and activity in Australians with chronic kidney disease: A longitudinal study, Nursing and Health Sciences, 2013, 15 ( 3 ), pp. 360-367, which has been published in final form at https: //doi. org/10. This article may be used for noncommercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving ( http: // olabout. 

Q2. What are the future works mentioned in the paper "Quality of life, fatigue, and activity in australians with chronic kidney disease: a longitudinal study" ?

The reason for higher mental health scores in some people with CKD ( i. e. their study as well as Perlman et al. 2005 ) is not known, and further research is warranted. Leaf and Goldfarb ( 2009 ), however, suggest that greatest improvements are seen in the HRQoL domains of physical symptoms and social functioning. ESA treatment for people with CKD, nevertheless, has improved the potential for higher activity levels ( Painter et al. 2002, Gandra et al. 2010 ) however several authors report that there has not been a corresponding increase in activity levels ( Painter et al. 2011 ). 

Q3. What causes people to experience decreased ability to undertake daily activities?

While anaemia affects normal physiological function, it also causes people to experience increased tiredness and reduced ability to undertake daily activities including exercise. 

Q4. What are the main factors that contribute to lower HRQoL?

Levels of physical functioning and general health, as well as being able to undertake fewer physical roles, contributed to lower HRQoL. 

Q5. What is the troublesome symptoms of CKD?

Despite advances in renal health care, fatigue remains ranked as one the most troublesome symptoms for people with CKD (Danquah et al. 2010). 

Q6. How many patients with CKD were initially in the study?

Of the 28 patients with CKD initially in the study, five became deceased during the time of the research, two withdrew and one was lost to follow-up. 

Q7. What are the factors associated with fatigue in CKD?

Factors associated with the fatigue experienced in CKD include: prescribed medications and their side effects; nutritional deficiencies; physiological alterations, particularly abnormal urea and haemoglobin levels; psychological factors such as depression, sleep dysfunction and those associated with haemodialysis treatment (low dialysate sodium and excessive ultrafiltration) (Welch 2006). 

Q8. What is the effect of frequent contact with people with CKD?

Renal nurses, in CKD clinics and dialysis units, have repeated and frequent contact with people with CKD over long periods of time; in some cases over decades. 

Q9. What was the strength of this study?

The strength of this study is that the authors used repeated measures over a 12 month period to examine HRQoL as well as levels of fatigue and activity following commencement of an ESA. 

Q10. What is the recent systematic review of 14 studies?

In a recent systematic review of 14 studies, Gandra et al. (2010) reported that in people with CKD not yet receiving dialysis (i.e. CKD stage 4) who were treated with ESA therapy for anaemia tended to have improvements in the physical function and vitality domains associated with HRQoL.12 Bonner, A., Caltabiano, M., & Berlund, L. (2013). 

Q11. What is the impact of ESA therapy on fatigue in dialysis patients?

In addition Johansen et al. (2011) recently published a systematic review of the impact of ESA therapy on fatigue in dialysis patients showing that the level of fatigue is reduced as haemoglobin levels are corrected. 

Q12. What is the reason for the lower levels of HRQoL?

The authors found that when people with anaemia due to CKD are commenced on ESA treatment there are some improvements in HRQoL, breathlessness and levels of fatigue over 12 months although their ability to undertake more activities does not change. 

Q13. What is the role of the HAP in determining health outcomes for people with CKD?

It is no longer adequate to measure only morbidity and mortality associated with chronic disease; HRQoL is particularly important in determining health outcomes for people with CKD (Soni et al. 2010). 

Q14. How did Hamilton and Hawley (2006) find that a nurse-led anaemia clinic?

Using the SF-36, Hamilton and Hawley (2006) found that a nurse-led anaemia clinic for patients with CKD significantly improved levels of quality of life three to six months later. 

Q15. What is the main reason for the lower levels of activity in people with CKD?

The capacity to perform routine living chores, and to participate in and enjoy everyday life is clearly reduced as a result of having CKD.