Starting Dialysis Worse Than 'Being Hit by a Silent Freight Train'

Pam Harrison

July 01, 2019

Within 6 months of starting dialysis, patients with end-stage renal disease experience a decline in their ability to carry out the instrumental activities of daily life (IADL), and this is especially prevalent among older and frail patients, a new Dutch study shows.

Moreover, caregivers reported an increase in the burden of caring for their loved ones undergoing dialysis within the same 6 months, the findings also indicate.

"To our best knowledge, this is one of the first studies that prospectively assessed functional course after initiating dialysis in community dwelling elderly with end-stage kidney disease (ESKD)," Namiko Goto, MD, University Medical Center, Utrecht, the Netherlands, and colleagues write.

"We have shown that functional decline in older adults is highly prevalent and is mainly due to a loss of independence in instrumental activities of daily living such as medication intake, laundry, and food preparation," she added in a statement from the American Society of Nephrology (ASN).

"In addition, 6 months after the start of dialysis, more caregivers experienced a high burden compared with the start of dialysis."

The study was published online June 27 in the Clinical Journal of the American Society of Nephrology (CJASN).

GOLD Study: Increasing Numbers of Older Adults Starting Dialysis

Increasing numbers of older adults are initiating dialysis for the treatment of kidney failure, but little is known about how this affects their functional status — or their ability to carry out activities essential to independent living.

This includes tasks needed for self-care — such as bathing, dressing, and continence — and those that are more complex that support independent living in a community, such as shopping, housecleaning, and telephone use.

The researchers used data from the Geriatric Assessment in Older Patients Starting Dialysis (GOLD) study to chart the trajectory in functional status among 187 elderly patients with ESKD initiating either hemodialysis or peritoneal dialysis.

The mean age of the cohort was 75.7 years and one third were female. Over three quarters of participants started their treatment in a hemodialysis center.

Prior to starting dialysis, 79% of participants were "care dependent" in  functional status, as assessed by combining measures of a patient's ability to carry out activities of daily living (ADL) plus IADL, the study authors note.

Slightly over half, at 52%, were mildly or moderately dependent whereas 27% were severely dependent. The latter were also highly likely to be frail, according to frailty tool assessments.

"Decline" was defined as a loss of 1 or more domains in functional status, "stable" was defined as no difference between baseline and follow-up, and "improvement" was defined as a gain of 1 or more domains in functional status.

"After 6 months follow-up, 2% of patients had received a kidney transplant, while  almost half of the participants experienced decline in functional status (40%) or died (8%). 34% remained stable and 18% of the participants improved," the researchers add.

The decline in functional status was mostly due to loss of instrumental activities of daily life independence.

Older Patients More at Risk of Decline

As might be expected, older participants were more at risk for poorer outcomes than younger patients (P = .002).

For example, none of the participants between 65 and 69 years of age died during the 6-month follow-up.

More patients in this age group also either improved or remained stable 6 months after dialysis initiation compared with older participants.

Table. Change in functional status over 6 months according to baseline age





65-69 years




70 to 74




≥75 years





Indeed, on multivariable analysis, only age — at an odds ratio (OR) of 1.05 per year older at baseline — was independently associated with poor outcome, the investigators note.

However, when overall frailty as assessed by the Groningen Frailty Indicator was used, a high score on this index was associated with a 97% higher risk of reaching the composite outcome of functional decline or death compared with a low Groningen Frailty Indicator score at an OR of 1.97 (P = .03), they add. 

Caregivers Affected Too

Follow-up data were available for 92 caregivers, more than half of whom reported that the participant deteriorated in one or more daily activities during the first 6 months following the start of dialysis.

"Overall, caregivers did not report more neuropsychiatric symptoms of participants at follow-up," the researchers note, with little change from 56% at baseline to 59% at follow-up.

However, caregivers did report an increase in patient apathy over follow-up (from 9% at baseline to 21% at 6 months [P = .007]) as well as irritability (from 17% at baseline vs 33% at follow-up [P = .008]).

And the most frequently affected activities of daily living were writing, grocery shopping, dressing, and being able to use zippers, button buttons and tie up shoelaces.

"Additionally, caregiver burden was more prevalent during follow-up," the researchers say — from 23% reporting moderate to high caregiver burden at baseline vs 38% some 6 months after patients had initiated dialysis (P = .004).

Caregiver burden is associated with a deterioration in quality of life for the caregiver, which could in turn have a negative impact on the patients themselves, the authors stress.

It is therefore important for physicians to ask caregivers about how their role is affecting them, and to offer them additional support — such as extended homecare — to try to decrease that burden, they suggest.

"Functioning on Dialysis: An Oxymoron?"

Commenting on the study in a patient voice editorial entitled "Functioning on Dialysis: An Oxymoron?" Daniel Abel writes, "To say that starting saying dialysis is like being hit by a silent freight train barely begins to describe the magnitude of the changes that take place physically and emotionally with the failure of one's own kidneys."

Under 40 at the age when his own kidneys failed, "it is not just the elderly who feel the effects of kidney failure and dialysis," Abel emphasizes.

"Age may make it all worse but it is hard to image feeling less functional than I did after starting dialysis at 38 years old," he adds.

Abel was lucky enough to eventually receive a kidney transplant from his sister.

Nevertheless, he affirms that kidney disease — whether it happens to the old or to the young, to the frail or to the strong, has physical ramifications that can be both "devastating" and "life-changing."

"And when we aren't wearing our agony on our sleeve, insight and kindness [from our medical team] go a long way," he notes.

"The transplant was transformational and gave me my life back, a testament to the lack of functional restoration provided by dialysis alone," Abel concludes.

Goto and Abel have disclosed no relevant financial relationships.

Clinical Journal of the American Society of Nephrology (CJASN). Published online June 27, 2019. Full text

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