1. Hungarian Kidney Foundation2. Institute of Pathophysiology, Faculty of Medicine, PhD School of

Medical Sciences, Semmelweis University,3. Department of the Hungarian Congenital Abnormality Registry and

Surveillance, National Center for Healthcare Audit and Inspection,4. Avicenna International College, Budapest, Hungary.

László Rosivall 1,2, Miklós Molnár 2 Judit Béres 3, Shahrokh MirzaHosseini 4

Multiple Disadvanteged People, Hungarian Example

8th Conference of Kidney Disease in Disadvantaged PopulationsSatellite Symposium of the World Congress of Nephrology,

Victoria, British Columbia, Canada April 12th – April 14th, 2011

Gypsies in Europe

• Multiple arrivals in Europe from India centuries ago

• Different populations

• Stretching across country borders

• A number of genetic disorders seen

(assumed that galactokinase deficiency and the

congenital glaucoma mutations: Indian origin)

Roma Education Level in Hungary (%)

Subject Total Male Female

Incomplete elementary

30,2 24,2 36,1

Elementary 36,4 37,9 34,9

Vocational 20,6 26,6 14,7

High school 11,4 10,5 12,4

Higher education

1,3 0,9 1,8

Job Status Before Global Recession

Non-segregated

Segregated Getto

Just studies 6,1 3,8 2,7

Active Worker 31,0 28,2 13,9

Unemployed 30,8 36,8 44,2

Maternity leave 10,2 16,6 18,5

Pension 5,2 5,7 5,3,

Disabled 16,7 13,0 15,5

Frequent Genetic Diseases of Gypsies

• Primary Congenital Glaucoma (1/10000 vs. 1/1200), with strong regional differences

• Congenital Myasthenia Syndrome (AChR, epsilon mutation, almost exclusively in Roma population)

• Spinal Mucsular Atrophy• Inherited Limb Muscular Dystrophy (type 2C)• Epidermolysis Bullosa• Galactokinase deficiency• Glanzman Thrombasthenia

• Autosomal Dominant Polycystic Kidney (ADPKD 2 in a certain region x 20 higher)

Gypsies - Hungary

• One of the declared goals of Hungarian EU presidency is to address the integration issue of the Roma population all over the Europe.

 

East-North Hungary: A Sample Dialysis Center Data (B.Braun) 

Total No patients: 222 (Gypsy: 14; 6%)

Hemodialysis Patients : 183 (11 Gypsy, 6%)

CAPD : 39 (3 Gypsy, 8%)

Background Disease:

•Diabetes mellitus : 6 pax

•Chronic Nephritis : 8 pax (3 TIN, 2 nephrosclerosis, 3 GLN)

Transplantation-Related Characteristics of Group A (Caucasians) and Group B (Gypsies)

Age, yr ± SD HLA mismatches ± SDGroup A (n = 1825) 42 2,89Group B (n = 93) 34 3,06

*

*

*

*

*

Langer et al, Transplantation Proceedings, 37, 729–730 (2005)

Patient and Graft Survival in Group A (Caucasians)and Group B (Gypsies)

Caucasians Gypsies

% %

*

*

*

*

Langer et al, Transplantation Proceedings, 37, 729–730 (2005)

30

40

50

60

70

80

90

sf12phys

sf12ment

Effect of KD

Burden of KD

Symptom

s

Sleep

Physical fntc

Emotional W

B

Energy/fatigue

Gypsys

Non Gypsys

Me

an

of

KD

QO

L p

oin

tQuality of Life inTransplanted patients

Score of different HRQOL domains in TransQoL-HU Study (n=1067) -2002

p>0.05 in all domains

There is not much difference (unpublished)

DepressionCESD score (median, IQR) from TransQoL-HU Study (n=1067) - 2002

p=0.06

0

5

10

15

20

25

1 2

p=0.06

Gypsy Non Gypsy

(Unpublished)

Prevalence of depression

0

5

10

15

20

25

30

35

40

1 2

Gypsy Non Gypsy

p=0.03

%

(Unpublished)

Survival analysisTransQoL-HU-2002-2010

(Unpublished)

Graft Survival analysisTransQoL-HU-2002-2010

(Unpublished)

Further clinical observations

• ESRD more frequent, similar to Afro-Americans

• Recive blood transfusion from non-Roma blood donors

• Have many children, possibly from different fathers

• B blood group is more frequent among them

• HLA incompatibility is more frequent

• Cultural, social, economical disadvantage are contributory

factors

• Living kidney donors are recommended

ISU usage in MINIT-HU Study (n=993) -2007Immuno-biological Differences?

0102030405060708090

100

Gypsy

Non Gypsy

*: p<0.05

*

Conclusion

• Differences in outcome of the renal transplantation and frequency of different renal diseases are due to genetical, economical, social and cultural differences.

• Because of this complex background, the improvement in their health status is also complex and needs a holistic approach.