Insights Into
Dialysis Patients
From DPC’s 2016
Annual Patient Survey
By Jackson Williams , Director of Regulatory Affairs and General Counsel, Dialysis Patient Citizens
DPC conducts an annual survey of dialysis
patients to guide our public policy priorities,
benchmark your access to care, and identify
challenges to living with end-stage renal
disease. We frequently report findings to you
in our newsletters, to the news media, and
to policymakers in Washington DC and state
capitals. The most recent DPC survey of 510
dialysis patients was conducted by research firm
Ipsos during September 2016.
In general, the average DPC member has been
on dialysis for 6.7 years, and 19% have been on
dialysis for more than 10 years. One-third of our
members who have not received transplants are
on a transplant waiting list.
Here are our findings on specific topics covered in this past
summer’s survey.
Patient Engagement
A big trend in health care today is “consumerism,” in which
patients are given more information about providers and
urged to compare them based upon various quality indicators.
Are dialysis patients—who interact with the health care
system much more frequently than other consumers—more
engaged in this aspect of their care? Our survey found not.
The Medicare program has created a website called Dialysis
Facility Compare, which reports several quality measures. Our
survey found that only 11% of ESRD patients have gone to
this website. This is the same percentage as members of the
general public who have looked for online ratings of doctors
and hospitals. Most of the ESRD patients who looked at the
Dialysis Facility Compare website were simply curious about
how their facilities compared to others, or were looking for
a facility to use while traveling. We found only a
handful of people who used the tool to find a new
clinic.
The year before, our survey asked dialysis patients
if their doctors made their medical records
available to them through an online “patient
portal.” We found that ESRD patients use these
portals at the same rate as consumers overall.
One area where we believe ESRD patients
are significantly more engaged than other
patients is in awareness of Medicare complaint
processes. Our survey found that 69% of ESRD
patients know what the ESRD Networks are.
There is no comparable data of non-ESRD
Medicare beneficiaries’ awareness of the Quality
Improvement Organizations, the counterpart of ESRD
Networks, but it is generally understood that public awareness
of Medicare grievance procedures is very low.
Economics of Living With ESRD
While 54% of ESRD patients were employed at the time their
kidneys failed, afterward only about 7% work full-time and
another 5% work part-time. Full-time work is higher among
patients on peritoneal dialysis (18%) or home hemodialysis
(11%). Seventeen percent of transplant patients report
working full-time.
Most patients report their employment status as “retired”
(54%). Among reasons reported for being out of the workforce
are not feeling well enough to work (50%), perceived inability
to juggle dialysis treatments and a work schedule (28%) and
fear of losing social insurance benefits (19%).
Thirty-five percent of ESRD patients reported receiving Social
Security Disability payments. With regard to health care,
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