1. ETHNIC DISPARITIES IN KIDNEY TRANSPLANTATION: REPLACEMENT OF RENAL FUNCTION IN ROMA („GYPSIE“) MINORITY IN CROATIA Milica Kljak University Hospital Centre Zagreb Department of Internal Medicine Department of Nephrology, Arterial Hypertension, Dialysis and Transplantation

2. 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.

3. 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

4. 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

5. 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)

6. Results: ROMA PEOPLE VS.CROATIAN PEOPLE

7. 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

8. 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

9. 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.

10. 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.

11. 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.

12. 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 ”.

13. I.H., age 55 Tx 09.05.2013. Time on HD 1,5 year Donor N.H.- wife age 48