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Q J Med 2003; 96: 499-504
© 2003 Association of Physicians

End-stage renal disease in Indo-Asians in the North-West of England

A. Trehan, J. Winterbottom, B. Lane, R. Foley, M. Venning, R. Coward, A.M. MacLeod1 and R. Gokal

From the SIRS group, Renal Unit, Manchester Royal Infirmary, Manchester and 1Renal Association Standards Subcommittee, Aberdeen, UK

Received 13 September 2002 and in revised form 14 April 2002


    Summary
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 Summary
 Introduction
 Methods
 Results
 Discussion
 References
 
Background: The incidence of end-stage renal disease (ESRD) in England is increasing. There is a higher incidence of ESRD in British Indo-Asians than in the White population.

Aim: To determine to what degree the increasing demand for renal replacement therapy in the UK is due to Indo-Asian patients. To study the presentation to renal services of Indo-Asian patients with ESRD and report any inequalities in initial treatment of Indo-Asian patients with ESRD compared to their White counterparts.

Design: Prospective, inception cohort study.

Methods: Consecutive adult patients with ESRD who started renal replacement therapy between 1 April 2000 and 31 December 2001 in all 14 renal units serving an area from North Cheshire to South Cumbria, including Greater Manchester and Lancashire, were recruited and interviewed.

Results: Of the 578 patients, 9.5% were Indo-Asian. The annual acceptance rate for renal replacement therapy was 342 per million population in Indo-Asians, compared with 91 per million population in the White population ( p < 0.001). Indo-Asian patients with ESRD were younger (median age 51 years vs. 60 yrs, p = 0.006) and more socially deprived (81% vs. 36.5% in the 5th Carstairs quintile, p < 0.001). A greater proportion of Indo-Asian patients with ESRD presented late to specialist renal services (31% vs. 19%, p = 0.03). Once adjusting for their younger age, atherosclerotic renovascular disease and/or hypertensive nephropathy was more prevalent in Indo-Asian patients (OR 4.9; p = 0.03). There was no difference in the initial mode of maintenance dialysis or the perception of choice the patients felt they had, based on their ethnicity.

Discussion: There is a silent epidemic of ESRD in Indo-Asian patients in the North-West, possibly vascular in aetiology, in which specialist intervention is late. This suggests that Indo-Asian patients should be prioritized for early intervention strategies to reduce the burden of ESRD.


    Introduction
 Top
 Summary
 Introduction
 Methods
 Results
 Discussion
 References
 
In England, the incidence of end-stage renal disease (ESRD), requiring dialysis or transplantation, has steadily increased from 67 per million population in 1991/92 to 92 per million population in 1998.2 The UK renal registry and European registry3,4 data show that older patients and patients with co-morbid illnesses, especially diabetes, are being accepted in greater numbers for renal replacement therapy. Several retrospective studies5–8 have found an increased incidence of end-stage renal disease in people who ethnically originate from the Indian subcontinent (Indo-Asians) living in the UK, an ethnic minority whose size and median age is growing. There was a high demand for renal replacement therapy in this population, which was multiplied in older age groups.7 There is also evidence to suggest that Indo-Asian people with diabetes, which is now the commonest single cause of ESRD in the UK,2 are more susceptible to diabetic nephropathy than their White counterparts.9 Given this, it is possible that the demand for renal replacement therapy may be rising exponentially in proportion to the growth of this population. It is important to study this in areas with a high proportion of Indo-Asian people, both to provide adequate health resources to meet this need and to suggest strategies to reduce the burden of ESRD. One of the reasons suggested for this increase in ESRD is reduced access to preventative health care that might reduce the progression of renal diseases. This has been noted in other ethnic minority groups outside the UK,10 but there is little research on this in the Indo-Asian population in the UK. In addition, equity of therapy is a fundamental principle of the NHS and, as stated by the Renal Association: ‘in making the appropriate choice of [dialysis] therapy, patient preference must be considered after informed guidance on options ... ’.11 This principle may be more difficult to achieve in patients from ethnic minorities, because of language and cultural barriers, and if this is the case, attention should be paid to addressing this problem.

We present the results of a prospective, inception cohort of patients with ESRD who started renal replacement therapy in the North West, a part of the country with a large Indo-Asian population. We report the incidence of ESRD, and the characteristics and the length of specialist follow-up prior to inception of dialysis of this cohort of Indo-Asian patients. We also report on the treatment they received as they started renal replacement therapy in comparison to their White counterparts, and the choice they felt they had been offered.


    Methods
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 Summary
 Introduction
 Methods
 Results
 Discussion
 References
 
Consecutive adult patients who started renal replacement therapy between 1 April 2000 and 31 December 2001 in Manchester, North Cheshire, South Cumbria and Lancashire were entered onto the study after their first dialysis session or the date of their transplant. All renal units in the region were visited regularly to ensure all patients were entered. They all had new ESRD as defined by the Renal Association Standards and Audit Subcommittee.11 Their demographic characteristics, renal diagnosis, mode of presentation to renal services, co-morbid conditions and initial mode of maintenance dialysis were recorded. Patients were interviewed as soon as logistically feasible regarding choice about dialysis modality and smoking history.

Ethnicity, ascertained by patient questionnaires, was classified as White (of European and North American descent), Indo-Asian (of Indian subcontinent descent), Black (of African and West Indian descent) and Chinese (of South-East Asian descent), in keeping with the categories used by the UK Renal Registry.2 The ERA/EDTA12 system was used to classify primary renal diagnosis. In this classification, multisystem disease refers to diseases which affect other organs as well as the kidney, not including diabetes or vascular/hypertensive disease. The Carstairs Index,1 a surrogate marker of social deprivation, was calculated from postcodes to give a deprivation quintile (the 1st quintile is the least socially deprived; the 5th the most). A Carstairs score, based on unemployment, no car, low social class and overcrowding, is given to each postcode sector, which are then divided into quintiles. The presence of diabetes, ischaemic heart disease, peripheral vascular disease, cerebrovascular disease and initial mode of maintenance dialysis therapy, including dialysis access, were recorded. The serum creatinine level at first renal referral was noted. Advanced chronic renal disease was defined as a serum creatinine >500 µmol/l (at this level progression to ESRD is almost inevitable).13 Late referral, a marker for presenting as a uraemic emergency, was defined as a referral time less than 4 weeks before initiation of dialysis.14

Annual acceptance rates for renal replacement therapy were calculated for the population living in Greater Manchester, because the population demographics and ethnic minority mix is clearly defined in this region by the government Office of National Statistics.14,15,16 Binary logistic regression, using ‘Indo-Asian’ as the outcome of interest, was used to give adjusted odds ratios.


    Results
 Top
 Summary
 Introduction
 Methods
 Results
 Discussion
 References
 
578 patients were entered onto the study between 1 April 2000 and 31 December 2001, and ethnicity was recorded in all of them: 9.5 % were Indo-Asian, 88 % were White and 2.5 % were from other ethnic minorities.

The overall acceptance rate for renal replacement therapy in Greater Manchester was 105 per million population per year. For the Indo-Asian population it was 342 per million per year compared with 91 per million per year for the White population (p < 0.001, Poisson regression). Age-standardized acceptance rates are shown in Table 1. This shows the much higher incidence of ESRD in all age groups in Indo-Asian patients.


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Table 1 Age-specific acceptance for RRT and population by age and ethnic minority in Greater Manchester

 
The characteristics of the two different groups are shown in Table 2. Among patients starting renal replacement therapy, Indo-Asian patients were younger and more socially deprived. The proportion of the primary renal aetiologies responsible for ESRD is the same for Indo-Asian and White patients, with diabetic nephropathy the single commonest cause in both groups. More Indo-Asian patients presented with advanced chronic renal disease and as uraemic emergencies. There was no difference between the groups in terms of co-morbid illnesses at the inception of dialysis, nor in the mode of their initial maintenance dialysis and the choice they were given regarding this.


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Table 2 Comparison of Indo-Asian and White patients at inception of dialysis therapy

 
Multivariate analysis (shown in Table 3) confirmed that, by being of Indo-Asian descent, a patient with ESRD is more likely to be younger, more socially deprived and present late to specialist renal services. In addition, accounting for these differences means that Indo-Asian patients are more likely to have a vascular aetiology for their renal disease.


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Table 3 Multivariate comparison of Indo-Asian and White subjects using logistic regression

 

    Discussion
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 Summary
 Introduction
 Methods
 Results
 Discussion
 References
 
There have been no previous studies defining the annual acceptance rate for renal replacement therapy in Greater Manchester in different ethnic minorities, but results from a retrospective study in the Thames region in 1991/1992,8 found an acceptance rate of 61 per million per year in the White population and 178 per million per year in the Indo-Asian population. Although there has been a greater increase in acceptance rate for renal replacement therapy in the Indo-Asian population in comparison with the White population over the last decade (92% increase compared with 49%), the Indo-Asian population in Greater Manchester has increased by 16.6% approximately during this time with a corresponding increase of 1.66% in the White population.16 The population growth and the higher incidence of ESRD seen in the Indo-Asian population suggests that the acceptance rate should be even higher in this population. Further studies would have to be undertaken to determine if Indo-Asian patients are not being accepted for renal replacement therapy, and whether this is because of non-referral to renal services or non-acceptance by renal specialists, or refusal by Indo-Asian patients to have dialysis. These results can only be interpreted as crude estimates, as they are based on population projections from the 1991 census, the Thames region has a higher proportion of Indo-Asians (7% as quoted in at the Thames study8 in comparison with 4.9% in Greater Manchester in the latest estimates16) and there may be regional differences in renal replacement therapy acceptance policies. To accurately determine the increase in ESRD, the same data would have to be collected in Greater Manchester, prospectively, over the next 5 to 10 years. The acceptance rate would also be affected by cross-boundary migration of patients. This study also accepts patients from the neighbouring regions of Lancashire and Cheshire, and so reduces some of this bias, and it is unlikely that there sufficient migration across its other borders to significantly alter these results.

A study following all the population of the North West, prospectively studying the development of renal disease, would provide invaluable information about risk factors for renal disease, eventually leading to effective prevention strategies. However, this study would be prohibitively expensive, as it would require a huge number of participants to be followed-up for a great length of time. Therefore this type of study should initially be undertaken in smaller populations who have a high risk of developing renal disease. Our study would suggest that Indo-Asian people living in the UK are an appropriate group to target for such future studies. This has been done in other ethnic minority groups worldwide17–19 who have a similarly high incidence of renal disease, leading to the discovery of novel risk factors for development of renal disease.

Indo-Asian patients are more likely to have vascular/hypertensive renal disease. There are several studies that suggest that blood pressure control, glycaemic control and treatment of other vascular risk factors can slow the progression of renal disease.18 It is likely that social deprivation and late referral to renal services (factors which are likely to be interconnected20) do not allow Indo-Asian patients to benefit from these treatment strategies. This has been noted in other populations with a high incidence of renal disease. A study to determine the reasons for the four-fold increase in ESRD in African American men found that adjusting for age, socioeconomic status and cardiovascular risk factors (diabetes, previous myocardial infarction, serum cholesterol, blood pressure and cigarettes smoked) reduced the relative risk of ESRD from 3.2 to 1.87 compared with White men.10 The Carstairs Index has not been validated in the Indo-Asian population. It is based on household characteristics of the population living in the postcode sectors, so should be accurate for postcode sectors which are predominantly Indo-Asian, but may be inaccurate in areas where the majority of the population are White.

This study shows that a greater proportion of Indo-Asian patients come to the attention of renal services with advanced renal disease, when renal replacement therapy is almost inevitable.13 This means the opportunity to halt or slow the progression from chronic renal impairment to ESRD, requiring lifelong renal replacement therapy, has been lost. Equally worrying is that a greater proportion of Indo-Asian patients present as uraemic emergencies, having in addition missed the benefits of treatment for renal anaemia, renal osteodystrophy, nutritional advice and planning of their dialysis. It is not therefore surprising that presenting this late is associated with a higher mortality and morbidity.21 These patients are put onto the renal transplant waiting list later in the course of their illness, and run the risk of being more difficult to successfully transplant, because of sensitization reactions to emergency blood transfusions. The Renal Association recommends referring everyone with a serum creatinine > 150 mmol/l to a nephrologist,11 and it is apparent that this is less likely to be done if a patient is Indo-Asian. Further work needs to be done to establish whether Indo-Asian patients present to primary health care services later, or are not investigated for renal disease, or whether there is more difficulty with referral to specialist renal services in comparison to White patients.

The most effective method to reduce the burden of renal disease on individuals and the NHS is to prevent the occurrence of the disease. This study would suggest that research into screening Indo-Asian patients (especially those at high risk, which would include older patients, diabetic patients, hypertensive patients and relatives of patients with renal disease22) should be a priority, as a significant amount of their renal disease, in particular vascular renal disease, may be preventable. There is a specific programme in the US to screen patients susceptible to renal disease as part of a research project,23 but this has not been adopted in the UK as yet. Screening and preventing diabetic renal disease has been highlighted in the National Service Framework for Diabetes,24 and preventing vascular disease has been highlighted in the National Service Framework for Coronary Disease.25 Both of these could be used to implement changes to reduce the incidence of renal disease. Screening for renal disease is not mentioned in the National Service Framework for Older People.26 Further projects to highlight the need for early detection of renal disease in Indo-Asian patients by General Practitioners should be undertaken. There is a the National Service Framework for Renal Disease due for publication soon, and hopefully this will provide a means to implementing the changes needed to reduce the incidence of end-stage renal disease in the Indo-Asian population, as highlighted in this paper.


    Footnotes
 

Address correspondence to Dr A. Trehan, Renal Unit, Manchester Royal Infirmary, Oxford Road, Manchester M13 9WL. e-mail: anutrehan{at}yahoo.com


    References
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 Introduction
 Methods
 Results
 Discussion
 References
 
1. Morris R, Carstairs V. Which deprivation? A comparison of selected deprivation indexes. J Public Health Med 1991; 13:318–26.[Abstract/Free Full Text]

2. UK Renal Registry. The Third Annual Report, 2000.

3. Berthoux F, Gellert R, Jones E, Mendel S, Valderrabano F, Briggs D, Carrera F, Cambi V, Saker L. Epidemiology and demography of treated end-stage renal failure in the elderly: from the European Renal Association (ERA-EDTA) Registry. Nephrol Dial Transplant 1998; 13 (Suppl. 7):65–8.[Medline]

4. Brunner FP, Brynger H, Challah S, Fassbinder W, Geerlings W, Selwood NH, Tufveson G, Wing AJ. Renal replacement therapy in patients with diabetic nephropathy, 1980-1985. Report from the European Dialysis and Transplant Association Registry. Nephrol Dial Transplant 1988; 3:585–95.[Abstract/Free Full Text]

5. Lightstone L, Rees AJ, Tomson C, Walls J, Winearls CG, Feehally J. High incidence of end-stage renal disease in Indo-Asians in the UK. Q J Med 1995; 88:191–5.

6. Ball S, Lloyd J, Cairns T, Cook T, Palmer A, Cattell V, Taube D. Why is there so much end-stage renal failure of undetermined cause in UK Indo-Asians? Q J Med 2001; 94:187–93.

7. Roderick PJ, Raleigh VS, Hallam L, Mallick NP. The need and demand for renal replacement therapy in ethnic minorities in England. J Epidemiol Community Health 1996; 50:334–9.[Abstract]

8. Roderick PJ, Jones I, Raleigh VS, McGeown M, Mallick N. Population need for renal replacement therapy in Thames regions: ethnic dimension. Br Med J 1994; 309:1111–14.[Abstract/Free Full Text]

9. Burden AC, McNally PG, Feehally J, Walls J. Increased incidence of end-stage renal failure secondary to diabetes mellitus in Asian ethnic groups in the United Kingdom. Diabet Med 1992; 9:641–5.[ISI][Medline]

10. Klag MJ, Whelton PK, Randall BL, Neaton JD, Brancati FL, Stamler J. End-stage renal disease in African-American and white men. 16-year MRFIT findings. JAMA 1997; 277:1293–8.[Abstract]

11. The Renal Association. Treatment of Adult Patients with Renal Failure. Standards and Audit Measures, 3rd Edition, 2002. [http://www.nephronline.org/standards3]

12. Berthoux F, Jones E, Gellert R, Mendel S, Saker L, Briggs D. Epidemiological data of treated end-stage renal failure in the European Union (EU) during the year 1995: report of the European Renal Association Registry and the National Registries. Nephrol Dial Transplant 1999; 14:2332–42.[Abstract/Free Full Text]

13. Feest TG, Mistry CD, Grimes DS, Mallick NP. Incidence of advanced chronic renal failure and the need for end stage renal replacement treatment. Br Med J 1990; 301:897–900.[ISI][Medline]

14. Metcalfe W, Khan IH, Prescott GJ, Simpson K, MacLeod AM. Can we improve early mortality in patients receiving renal replacement therapy? Kidney Int 2000; 57:2539–45.[CrossRef][ISI][Medline]

15. Office for National Statistics. Age by Ethnic group. [http://www.statistics.gov.uk/statbase/Expodata/Spreadsheets/D5347], 2002

16. Schuman J. The ethnic minority populations of Great Britain–latest estimates. Popul Trends 1999; 16:33–43.

17. Freedman BI, Spray BJ, Tuttle AB, Buckalew VM, Jr. The familial risk of end-stage renal disease in African Americans. Am J Kidney Dis 1993; 21:387–93.[ISI][Medline]

18. Hoy WE, Wang Z, VanBuynder P, Baker PR, McDonald SM, Mathews JD. The natural history of renal disease in Australian Aborigines. Part 2. Albuminuria predicts natural death and renal failure. Kidney Int 2001; 60:249–56.[CrossRef][ISI][Medline]

19. Nelson RG, Meyer TW, Myers BD, Bennett PH. Course of renal disease in Pima Indians with non-insulin-dependent diabetes mellitus. Kidney Int Suppl 1997; 63:S45–8.[CrossRef][Medline]

20. Winkelmayer WC, Glynn RJ, Levin R, Owen WF, Jr., Avorn J. Determinants of delayed nephrologist referral in patients with chronic kidney disease. Am J Kidney Dis 2001; 38:1178–84.[ISI][Medline]

21. Trehan A, Winterbottom J, Foley R, Venning M, Coward R, MacLeod A, Gokal R. Impact of late referral on outcomes in end stage renal disease. J Am Soc Nephrology 2001; 12:253A.

22. Satko SG, Freedman BI. Screening for subclinical nephropathy in relatives of dialysis patients. Semin Dial 2001; 14:311–13.[CrossRef][ISI][Medline]

23. National Kidney Foundation. Early success spurs expansion of KEEP screening program [Kidney Early Evaluation Program]. [http://www.kidney.org/general/news/keep_expansion.cfm], 2002

24. Department of Health. National Service Framework for Diabetes. [http://www.doh.gov.uk/nsf/diabetes/index.htm], 2001.

25. Department of Health. National Service Framework for Coronary Disease. [http://www.doh.gov.uk/nsf/coronarynsf5. htm], 2000.

26. Department of Health. National Service Framework for Older People. [http://www.doh.gov.uk/nsf/olderpeople.htm], 2002.


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