ETHNIC DISPARITIES IN KIDNEY TRANSPLANTATION:

REPLACEMENT OF RENAL FUNCTION IN ROMA („GYPSIE“)

MINORITY IN CROATIA

Milica KljakUniversity Hospital Centre Zagreb  Department of Internal Medicine

  Department of Nephrology, Arterial Hypertension, Dialysis and Transplantation

Access to kidney transplantation:

•Racial and ethnic disparities exist in renal transplantation

• In the USA - disparities affect blacks, Hispanic Americans, Native Americans, Alaskan natives and Asians.

•Although is meant otherwise, Europe is not homogeneous in this regard.

Access to kidney transplantation:• Roma people - socially deprived - uneducated - unemployed - illiterate• only one paper dealing with problem of kidney

transplantation in this group of patients - published by a Hungarian group of authors

*Distribution of the Romani people in Europe in 2007. “Council of Europe”

Source: http://en.wikipedia.org/wiki/Romani_people_by_country

We had investigated all dialysis centers in Croatia to determine:

1. number of Roma people on dialysis,

2. their access to the transplantation and waiting list,

3. reasons for eventual failure to enter the waiting list for kidney transplantation

Results:

•There are 9463 registered Roma people in Croatia-but estimated number reaches 30.000 or even 40.000

•25 patients require renal replacement therapy, (prevalence of 830 pmp, compared with prevalence of 980 pmp in the general Croatian population)

Results:

0

10

20

30

40

50

60

70

Roma people 29 48,9 33,18

Croatian people 67 53,5 48,01

mean age at the start of dialysis

w aiting time on transplantation

mean age at the time of transplantation

ROMA PEOPLE VS.CROATIAN PEOPLE

Results:•One patient

received kidney allograft from the living unrelated donor (wife), and all other from the deceased donors.

•Patients were followed for 51.5 months (range 6-240 months).

R.O. , age 34

Tx 25.09. 2011.

Time on HD - 4 years

D.O., age 30

Tx 19.04. 2012.

Time on HD- 3 years

Posttransplant complications:•urinary tract infections- most frequent •episodes of graft rejection – 2 patients•non-compliant with immunosuppressive

medications - 2 patients•hematoma and urinoma - 1 patient•CMV reactivation -1 patient•severe acute rejection-1 patient•death -1 patient

At the moment:•14 Roma patients are currently treated

with haemodialysis in Croatia. •10 patients are old and have clinical

contraindications for transplantation, •1 is on the waiting list, •1 left hospitalization during pretransplant

evaluation twice, •1 refused evaluation, •1 is currently evaluated for the waiting

list.

Rolle of nurse:

• Establish a TRUSTING RELATIONSHIP

• Don’t rely on written materials

• Include literate family members in education

• Use small amount of information

• Use imaging vocabulary and labels with images

• Explain information in simple terms, using everyday language.

• Adapt / simplify the immunosuppressive protocol

• Allow patients the chance to restate information in their own words and to demonstrate every procedures being taught.

Conclusion:•Roma ethnicity has excellent access to

renal transplantation in Croatia. •They are younger than the average

Croatian ESRD patient, but many of them refuse evaluation for the waiting list.

•Communication difficulties, illiteracy and compliance are their major problems after transplantation, but also a great challenge to the multidisciplinary team that cares for this patients.

• Nurse is important member of this team. •Knowledge of the customs, life style, social and

cultural beliefs of Roma people can bring great assistance to the health care team.

• Involvement of family members in posttransplant treatment can also help to improve compliance and posttransplant "outcome”.

I.H., age 55

Tx 09.05.2013.

Time on HD 1,5 year

Donor

N.H.- wife

age 48