Prognostic Expectations of Patients with End-Stage Renal Disease

Approximately 400,000 Americans undergo long-term dialysis and patients with end-stage renal disease in the United States have a 20% to 25% 1-year mortality rate, which is comparable to many types of cancer. Being given an accurate estimate of prognosis can help patients and their families make informed decisions about goals of care, according to researchers, who add, “We believe that physicians should offer to discuss prognosis with patients, particularly those who are seriously ill.”

Previous studies have shown that patients with cancer often overestimate their chances of survival relative to their physicians, but there are few data on this overestimation among patients with noncancer diagnoses, leaving unanswered the question whether the earlier findings can be translated to patients with other end-stage conditions.

The possibility of kidney transplant is a factor that affects prognosis in end-state renal disease and dialysis-related decision-making. Transplant recipients have a 68% lower mortality rate compared with patients eligible for transplant who continue to receive hemodialysis. It is unknown how closely patients and their physicians agree about the likelihood of transplant as well as how expectations of prognosis and transplant candidacy influence their goals of care.

The researchers recently conducted an analysis to compare the perceptions of prognosis and likelihood of transplant among hemodialysis patients and their nephrologists. The study also tracked actual patient survival and examined the relationship between patients’ expectations and their goals of care. Study results were reported online in JAMA Internal Medicine [doi:10.1001/jamaintermed.2013.6036].

The researchers completed a medical record abstraction to estimate the 1-year mortality rate among patients who underwent dialysis any time from November 1, 2010, through September 1, 2011. The abstraction was followed by in-person interviews with eligible patients who had predicted 1-year mortality of at least 20%. Interviews were also conducted with the patients’ nephrologists. The researchers then compared patients’ and physicians’ expectations regarding 1-year and 5-year survival and candidacy for transplant, and measured the association between patients’ expectations and goals of care. Finally, actual survival was measured using Kaplan-Meir methods.

The medical record review identified 207 patients undergoing hemodialysis at 2 dialysis units in Boston, Massachusetts. Of those, 150 had an estimated risk of 1-year mortality of ≥20% and 57 had a risk of <20%. Those with higher risk were older (mean, 70.2 vs 48.4 years) and had a greater comorbid disease burden. Their nephrologists were less likely to report that they would be surprised if the patient died within the next 6 months (53.4% vs 96.3%).

Of the total cohort, 62 were interviewed. Of those, none reported that their nephrologist had discussed an estimate of life expectancy and the nephrologists reported they had done so for only 2 of the interviewed patients. The nephrologists provided the researchers with estimates of life expectancy for 89% (n=55) of the interviewed patients, but indicated that, even if the patients insisted on an estimate, they would refuse to do so for 60% (n=33) of those.

Patients were significantly more optimistic about their 1-year and 5-year survival compared with the nephrologists (P<.001) and more likely to describe themselves as candidates for transplant (66% vs 39%; P=.008); 12 of 29 patients whose nephrologists said they were not transplant candidates believed they were.

Regarding goals of care, 54% of patients interviewed said that if they were seriously ill they would prefer care aimed at relieving pain rather than extending life. Patients who believed they had a ≥90% chance of being alive in 1 year were significantly more likely to prefer life-extending care than those who reported a <90% chance (44% vs 9%; P=.045).

Actual survival was 93% at 1 year, but decreased to 79% by 17 months and 56% by 23 months.

Limitations cited by the authors included limiting the sample to patients from 2 hemodialysis units affiliated with academic medical centers, limiting generalizability.

In conclusion, the researchers said, “Our findings suggest the need for interventions to help providers communicate effectively with patients about prognosis.”