Evidence
Alert

New insights into how fatigue affects the lives of people on dialysis

Feelings of profound and relentless exhaustion while undergoing haemodialysis impact on patients’ ability to lead a normal life. This overwhelming fatigue is different from the immediate symptoms of post-dialysis fatigue observable in a clinical setting and can pervade all aspects of a patient’s life.

This review of 65 international studies, including 1,713 participants, found that patients can feel unable to maintain fulfilling relationships and are vulnerable to misunderstandings and criticisms because of the need to rest. Because it occurs outside the clinical setting, the impact and high incidence of haemodialysis-related fatigue remains an unrecognised and underappreciated symptom of renal replacement therapy.

Explicit recognition of the impact of haemodialysis-related fatigue and the establishment of effective interventions is needed to better support patients with renal failure.

 

Why was this study needed?

At any one time, there are approximately 5,000 patients in the UK waiting for a kidney transplant following established renal failure. Less than 3,000 kidney transplants are carried out each year with most patients also requiring dialysis to prolong life while awaiting transplantation.

Haemodialysis removes waste products which build up in the blood when the kidneys no longer function properly. Treatment is usually undertaken three times a week for approximately three to four hours. The UK Renal Registry reports that as of December 2016, the median time a patient spends on haemodialysis is 3.2 years.

Fatigue affects 60% to 97% of patients undergoing haemodialysis. Patients consistently rate haemodialysis-related fatigue as an important patient-defined health outcome above survival, mobility and pain.

This review of English language articles promotes a fuller understanding of patient perspectives of haemodialysis-related fatigue.

 

What did this study do?

This systematic review and thematic synthesis describes patient perspectives on the meaning and impact of fatigue while undergoing haemodialysis. Sixty-five qualitative studies are included in the review representing the views of 1,713 patients undergoing haemodialysis.

Patients were based in 15 countries, including the UK (three studies) but predominantly based in the United States, Australia, Sweden and Canada. Nine studies explicitly included fatigue in the aim of their study; 56 studies included perspectives of fatigue within the broader scope of their study.

The quality of reporting was independently assessed using the Consolidated Criteria for Reporting Qualitative Health Research (COREQ) framework. Only English-language articles were included in the review with most studies undertaken in high-income countries.

 

What did it find?

  • Patients experience debilitating and relentless exhaustion because of haemodialysis-related fatigue, which encompasses their whole body and can persist beyond the immediate treatment period.
  • Haemodialysis-related fatigue restricts patients’ ability to engage in usual activities, because of the time needed to get to clinics and complete treatment about three times a week, needing to rest between treatments, and managing energy reserves.
  • Patients’ ability to fulfil relationship roles is hampered by haemodialysis-related fatigue. For example, impacts are felt on parenting, lack of stamina for sexual intimacy, or reduced ability to work and provide for their family.
  • Haemodialysis-related fatigue can leave patients feeling vulnerable to criticisms of laziness when they need to rest.
  • Patients feel that haemodialysis-related fatigue can lead to misunderstanding when they fail to meet the expectations of friends and family.

 

What does current guidance say on this issue?

The NICE 2018 guideline on renal replacement therapy and conservative management highlights fatigue as a possible general symptom of renal replacement therapy.

At present guidance only relates to a potential intervention for reducing post-dialysis fatigue resulting from dehydration, by using devices to improve estimates of the fluid to remove during dialysis.

 

What are the implications?

This review will help increase awareness and education of the persistent and pervasive nature of fatigue in patients receiving haemodialysis, facilitating improved communication and support between patients and healthcare professionals. One of the useful findings of this review is highlighting the overall fatigue experienced by those on dialysis, not just immediately after treatment.

It has highlighted the importance of the Standardised Outcome in Nephrology in Haemodialysis (SONG-HD) initiative, which is currently validating a measure of fatigue that reflects the dimensions that are most important to haemodialysis patients.

This should aid in measuring the impact of interventions to improve haemodialysis related fatigue in future research.

 

Citation and Funding

Jacobson J, Ju A, Baumgart A et al. Patient perspectives on the meaning and impact of fatigue in hemodialysis: a systematic review and thematic analysis of qualitative studies. Am J Kidney Dis. 2019; Apr 5. doi: 10.1053/j.ajkd.2019.01.034. [Epub ahead of print].

Ms Ju is supported by a National Health and Medical Research Council (NHMRC) program grant (ID 1092957). Ms Manera is supported by an NHMRC program grant (ID 1092957). Dr Tong is supported by an NHMRC fellowship (ID 1037162).

 

Bibliography

Kerr M. Chronic kidney disease in England: the human and financial cost. London: NHS England; 2012.

Kidney Care UK. Dialysis. Alton: Kidney Care UK (undated).

Kidney Research UK. Dialysis decision aid: making the right choice for you. Kidney Research UK; 2017.

The National Kidney Federation. Help and info: frequently asked questions. Worksop: The National Kidney Federation; reviewed 2017.

NICE. Renal replacement therapy and conservative management. NG107. London: National Institute for Health and Care Excellence; 2018.

NICE. Multiple frequency bioimpedance devices to guide fluid management in people with chronic kidney disease having dialysis. DG29. London: National Institute for Health and Care Excellence; 2017.

Produced by the University of Southampton and Bazian on behalf of NIHR through the NIHR Dissemination Centre

 

Commentaries

Expert commentary

People tend to think of organ donation when they think of kidney failure.

The most challenging aspects of kidney failure are not widely discussed or understood; while there is a growing interest in kidney patient experience, this should cover more than just the dialysis. Kidney patients regularly speak of their fatigue as part of their lives, their isolation and frustration in feeling like that.

Whether exercise, iron or some other treatment can help, it’s time to increase understanding of the brutal impact of kidney failure and encourage staff and others to show compassion to kidney patients.

Fiona Loud, Policy Director, Kidney Care UK

The commentator declares no conflicting interests

Author commentary

Kidney doctors like to measure things: creatinine, electrolytes, phosphate. Goal directed interventions have often focussed on biomedical variables: Kt/V, sodium profiling, high flux haemodiafiltration.  These parameters correlate poorly with patient wellbeing and outcomes. 

This study and the SONG (Standardised Outcome in Nephrology) programme of work put fatigue in all its guises and synonyms centre stage as one of the most important symptoms for patients receiving haemodialysis.  It defines four themes related to fatigue – the debilitating and exhausting burden of dialysis, restrictions of life participation, diminished capacity to fulfil relationships and vulnerability to misunderstanding. 

Fatigue pervades the life of many dialysis patients.  Fatigue should be the target of systematic clinical care and improvement in fatigue should be a research goal. Measuring fatigue should become a standard of care.

Donal O'Donoghue, Medical Director of the Greater Manchester Academic Health Science Network; Consultant Renal Physician at Salford Royal NHS Foundation Trust, University of Manchester Professor of Renal Medicine; President of the Renal Association

The commentator is a co-author of the study