Patient Perspectives on the Meaning and Impact of Fatigue in Hemodialysis: A Systematic Review and Thematic Analysis of Qualitative Studies, 2019

[SNT Gatchaman]

Patient Perspectives on the Meaning and Impact of Fatigue in Hemodialysis: A Systematic Review and Thematic Analysis of Qualitative Studies
Jacobson J, Ju A, Baumgart A, Unruh M, O'Donoghue D, Obrador G, Craig JC, Dapueto JM, Dew MA, Germain M, Fluck R, Davison SN, Jassal SV, Manera K, Smith AC, Tong A.

Rationale & objective: Fatigue is a highly prevalent and debilitating symptom in patients on hemodialysis therapy due to the uremic milieu, the hemodialysis treatment itself, and other comorbid conditions. However, fatigue remains underrecognized and the consequences are underappreciated because it may not be visible in clinical settings. This study aims to describe the experience that patients undergoing maintenance hemodialysis have with fatigue.

Study design: Systematic review and thematic synthesis of qualitative studies.

Setting & study populations: Patients undergoing hemodialysis.

Search strategy & sources: MEDLINE, Embase, PsycINFO, CINAHL, reference lists, and PhD dissertations were searched from inception to October 2018.

Data extraction: All text from the results/conclusion of the primary studies.

Analytical approach: Thematic synthesis.

Results: 65 studies involving 1,713 participants undergoing hemodialysis were included. We identified 4 themes related to fatigue: debilitating and exhausting burden of dialysis (bodily depletion, trapped in a vicious cycle of postdialysis exhaustion, vigilance and worry inhibiting rest, tiresome and agonizing regimen, and without remedy and relief), restricted life participation (deprived of time, managing energy reserves, frustrating need to rest, and joys foregone), diminishing capacities to fulfil relationship roles (losing ability to work and provide for family, failing as a parent, lacking stamina for sexual intimacy, and relying on others), and vulnerable to misunderstanding (being criticized for the need to rest and failing to meet expectations).

Link (Paywalled)

 

[SNT Gatchaman]

There are some similarities in the nature and impact of fatigue in patients with other chronic conditions, including cancer, cardiovascular disease, multiple sclerosis, and fibromyalgia, who have also described fatigue as beyond a usual tiredness. Fatigue has been referred to as a severe exhaustion that restricts social participation. Patients have also felt misunderstood and perceive a lack of empathy by others. They contend with guilt about disappointing their loved ones and are vulnerable in having to rely on others.

However, our review has identified some experiences and attitudes that are unique in the context of hemodialysis, which largely relate to the perception that the hemodialysis regimen intensified or worsened fatigue. Patients believed that the treatment to some extent caused symptoms that contribute to fatigue. The time and effort to travel for dialysis consumed their already limited energy, and the dialysis schedule deprived them of time they needed to rest, for example, having to wake early for a morning session. This unrelenting regimen exhausted their depleted energy reserves such that they could not participate in activities of living and interfered with social functioning. All this was in addition to the consequence of the disease. Some patients accepted fatigue as their “new normal” and attempted to organize their activities around it.

There is also some evidence for cognitive behavioral therapy and exercise therapy in managing fatigue in hemodialysis.

... psychological interventions (including stress management and relaxation techniques) and complementary and alternative therapies (including reflexology, aromatherapy, and acupressure) have also been evaluated. There is some evidence to suggest that these interventions are potentially effective in improving fatigue. However, larger high-quality randomized trials are needed to confirm these data.

We also recognize the challenges of conducting trials to address fatigue. One is the absence of a suitable measure. A recent systematic review of trials and observational studies involving patients receiving hemodialysis found that 43 different measures were used to assess fatigue in hemodialysis, yet these measures do not include patient-important dimensions such as loss of independence and erosion of self-esteem, as we found in this review.

For patients receiving hemodialysis who experience fatigue, fatigue is a profound and relentless exhaustion that encompasses weakness. Affected patients perceive that dialysis drains their whole body of energy and having to adhere to the demanding treatment schedule also consumes much of the patients’ time and drive.

Distinguishing the disease from treatment and the psychosocial sequelae in trying to assess and manage fatigue is clinically challenging.

 

[Denise]

Patient Perspectives on the Meaning and Impact of Fatigue in Hemodialysis: A Systematic Review and Thematic Analysis of Qualitative Studies
Jacobson J, Ju A, Baumgart A, Unruh M, O'Donoghue D, Obrador G, Craig JC, Dapueto JM, Dew MA, Germain M, Fluck R, Davison SN, Jassal SV, Manera K, Smith AC, Tong A.

Rationale & objective: Fatigue is a highly prevalent and debilitating symptom in patients on hemodialysis therapy due to the uremic milieu, the hemodialysis treatment itself, and other comorbid conditions. However, fatigue remains underrecognized and the consequences are underappreciated because it may not be visible in clinical settings. This study aims to describe the experience that patients undergoing maintenance hemodialysis have with fatigue.

Study design: Systematic review and thematic synthesis of qualitative studies.

Setting & study populations: Patients undergoing hemodialysis.

Search strategy & sources: MEDLINE, Embase, PsycINFO, CINAHL, reference lists, and PhD dissertations were searched from inception to October 2018.

Data extraction: All text from the results/conclusion of the primary studies.

Analytical approach: Thematic synthesis.

Results: 65 studies involving 1,713 participants undergoing hemodialysis were included. We identified 4 themes related to fatigue: debilitating and exhausting burden of dialysis (bodily depletion, trapped in a vicious cycle of postdialysis exhaustion, vigilance and worry inhibiting rest, tiresome and agonizing regimen, and without remedy and relief), restricted life participation (deprived of time, managing energy reserves, frustrating need to rest, and joys foregone), diminishing capacities to fulfil relationship roles (losing ability to work and provide for family, failing as a parent, lacking stamina for sexual intimacy, and relying on others), and vulnerable to misunderstanding (being criticized for the need to rest and failing to meet expectations).

Link (Paywalled)

The NIH institute on diabetes and kidney disease is having a workshop on post-dialysis fatigue. The email from NIH said they were hoping for input from PwME/CFS.
https://www.niddk.nih.gov/news/meetings-workshops/2023/scientific-workshop-on-post-dialysis-fatigue

In looking at the agenda though I see that the section on lessons from Chronic Fatigue Syndrome is being led or presented by Dedra Buchwald.
This prompted me to look at a couple of post-dialysis fatigue articles and I found they mention CFS.
I suspect that given Buchwald's involvement, the organizers don't understand the difference between CFS and ME and don't understand that fatigue and PEM are not the same thing by a long shot.....

From what I understand from a kidney patient, some people do experience (sadly) extreme exhaustion after dialysis with cognitive impairment as well but the trigger is dialysis (in some way). Additionally many of these people are not believed that dialysis triggers such symptoms.

 

[shak8]

I spent 20 years as a dialysis nurse and saw the fatigue every day, post dialysis. Big shift of fluid and electrolytes removed during the 3-4 hr. treatment, most patients ending up with low blood pressure/volume due to all the retained fluid removed.

Dizzy and staggering out of the clinic, home to bed, feel a bit better the next day. Repeat 3x a week. Not fun.

A whole workshop on dialysis fatigue versus what is usually on offer for ME/CFS ?

But then the US government is shelling out millions for dialysis treatments, so the decision is that this is important enough to warrant a workshop (and maybe is).

 

[Andy]

The NIH institute on diabetes and kidney disease is having a workshop on post-dialysis fatigue. The email from NIH said they were hoping for input from PwME/CFS.
https://www.niddk.nih.gov/news/meetings-workshops/2023/scientific-workshop-on-post-dialysis-fatigue

Full email posted here

Email from the NIH ME/CFS Information List.

"The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) will sponsor a Scientific Workshop on Post Dialysis Fatigue on May 22-23, 2023. Please visit this URL for more information about the workshop and to register: https://www.niddk.nih.gov/news/meetings-workshops/2023/scientific-workshop-on-post-dialysis-fatigue

The program will have components of the viewpoint from individuals with lived experience, lessons learned from other fields such as ME/CFS, measuring fatigue, biological discovery, adoption science, and social determinants of health.

NIDDK would value your voices at the workshop."

The agenda can be seen here, https://www.niddk.nih.gov/news/meet...ific-workshop-on-post-dialysis-fatigue?agenda which includes

Session III: Lessons Learned
1:45 p.m. – 2:05 p.m.
Lessons Learned from Chronic Fatigue Syndrome (CFS)
Dedra Buchwald, M.D., Director and Professor, Institute for Research and Education to Advance Community Health, Washington State University; Past President, American Association of Chronic Fatigue Syndrome (now International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis)

Topics for Discussion:

• What challenges did the field face in medically advancing CFS, a disease without hard diagnostic markers?
• What strategies were most successful at overcoming these barriers? What challenges does the field continue to face?
• What strategies will move the field forward? Please share your lessons learned.

2:05 p.m. – 2:25 p.m.
The Last Battle of the Gulf War: How Did We Scientifically Conquer Gulf War Illness (GWI)?
Robert Haley, M.D., Professor of Medicine and Chief of Epidemiology, U.S. Armed Forces Veterans; Distinguished Chair for Medical Research, The University of Texas Southwestern Medical Center

Topics for Discussion:

• Describe the process for uncovering and validating an epidemiologic case definition and exposure agent for GWI. How can we apply this approach for PDF when we have no accepted case definition and are unclear of what causes PDF?
• Briefly touch on how adjunctive neuroimaging pathology and the discovery of PON1 affected the science and practice of GFI. How did this affect the patient?

In the same thread it was highlighted that not only is Dedra Buchwald part of COFFI, which is a collection of BPS 'researchers' who focus on fatigue, she is also one of the named authors of the yet-to-be-published publication that claims to list the "Eight major errors in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis".

 

[rvallee]

Put plainly, medicine has made zero useful progress in understanding illness and symptoms, has no further knowledge than a century ago, or any point beyond. In fact, is obviously unable to deal with the subjective nature of illness.

There seem to be two ways to solve this: objectifying the subjective experience, or trying to subjectively understand it from a detached perspective, aka empathy. Clearly neither work, it's extremely rare to be able to understand the subjective experience of others without experiencing it, and medicine stifles this entirely anyway, seeing no problem pretending that a few fake numbers from weird questionnaires represent a whole person.

So clearly the only way forward is to accept this lived subjective experience and work from there. It cannot be objectified yet, maybe it never will. Failure of empathy is built in human nature, it's not just a failure in medicine, only the people experiencing something truly understand it, this is universal.

I've rarely seen such a useless process as this. It clearly amounts to nothing, has not lead to any knowledge gain at all, in fact has clearly made things worse. And somehow it just keeps plowing along because the academic model of research rewards publishing lots of useless stuff far more than it rewards breakthrough papers.

We need patient-first vocabulary and care. The idea that people who will likely never experience some subjective experience can understand it better than the people who do was always absurd, nothing works like that. We need real shared decision-making, or nothing will improve. The authoritarian model is a failure beyond the most basic stuff. Medicine needs humanity, basically. Illness and health cannot be objective anymore than justice or fairness, they are based on values we choose for ourselves, they are not found in nature and cannot be seen through a microscope.

 

[Sean]

I spent 20 years as a dialysis nurse and saw the fatigue every day, post dialysis....

Dizzy and staggering out of the clinic, home to bed, feel a bit better the next day. Repeat 3x a week. Not fun.

I used to fix dialysis machines, often in patients' own homes, so I got to see and know patients and the pros and cons of dialysis.

If your kidneys are bad enough to require dialysis, then you are already in serious trouble. Dialysis might keep you from being dead, but you are usually still quite sick, with multiple related medical issues, and have a much poorer quality of life and reduced life expectancy.

It is better than nothing, but it is no fun at all. Most are just hoping to hang on long enough for a kidney transplant to become available for them.

But no, let's get the psychs in to arbitrarily reframe it as a problem with the patient's perception of fatigue.