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Renal disease: a comparison of referrals across social groups

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Jenny Steel, BA (Hons), RN, DipN; Peter Ellis, BSc (Hons), MSc, MA, RN, PGCM, PGCE

Jenny-was Senior Nurse, The Renal Unit, King’s College Hospital, London, when this article was written. She is now Facilitator in Continuous Professional Development, Staff Development Unit; Peter-Research Projects Manager, King’s College Hospital, London

Health professionals are increasingly aware of the social causes of disease and ill health. In 1842, Chadwick recognised that the working classes had shorter life expectancies than rich merchants (Scambler, 1997), while in 1845 Frederick Engels controversially accused the ruling classes of the day of ‘social murder’ after observing the squalor in which the working classes lived and the detrimental effects this had on their health (Davey et al, 1995).

Health professionals are increasingly aware of the social causes of disease and ill health. In 1842, Chadwick recognised that the working classes had shorter life expectancies than rich merchants (Scambler, 1997), while in 1845 Frederick Engels controversially accused the ruling classes of the day of ‘social murder’ after observing the squalor in which the working classes lived and the detrimental effects this had on their health (Davey et al, 1995).

 


 

More recently the Black report (Townsend et al, 1992; DHSS, 1980), The Health Divide (Townsend et al, 1992) and the Acheson report (DoH, 1998) have all shown that inequalities in health are still an issue in the UK.

 


 

Fresh impetus to the debate on the social causality of disease has followed the fact that the medical risk factors for disease, such as proof of the association between smoking and mortality, are now increasingly well understood (Doll and Hill, 1964). However, what is less well understood is why some social classes are at greater risk of disease and death than others. Society and, more specifically, public health officials are now asking questions about the issues that underlie social risk factors, such as why certain groups of people smoke.

 


 

Social and cultural issues can be used to explain not only the causation of disease, but also the way in which people who are ill are treated. Perneger et al (1995) demonstrated that the diagnosis of primary renal disease was often influenced not by presenting symptoms but by race. When Schulman et al (1999) investigated the reasons for the differences in the use of cardiovascular procedures according to sex and race, they found that these were related not to need but to physician bias.

 


 

Socio-economic status may also influence the timing of a person’s decision to present to the doctor. Ionescu (1998) gives the example of people of lower socio-economic status presenting with more advanced colorectal cancer than persons from higher social groups. Social status, ethnicity, gender and age may also affect an individual’s access to health care, as demonstrated by the Acheson report (DoH, 1998).

 


 

Social issues and renal disease
There are no data on whether socio-economic factors affect the diagnosis, treatment or timing of referrals of people with renal disease to a nephrologist in the UK. It has been shown, however, that late referral is associated with increased mortality, morbidity and reduced psychological and social functioning (Innes et al, 1992; Ellis et al, 1998; Sesso and Yoshihiro, 1997) (Box 1).

 


 

The Afro-Caribbean and Asian population is at increased risk of renal failure owing to diabetes and/or hypertension (Roderick et al, 1994), and there has also been media publicity surrounding the under-treatment of older people (Revill, 2000). These issues prompted us to investigate the effects of age, gender and ethnicity on the timing of referral for nephrological care.

 


 

Many late referrals to renal services are unavoidable. These may be cases that are associated with diseases that have acute onset (such as myeloma), or those where the patient presents with highly advanced disease because they have assumed that their symptoms are related to their advanced age. Some late referrals, however, may be the result of missed opportunities for screening in high-risk groups or overlooked biochemical results (Ellis and Cairns, 2001; Khan et al, 1994).

 


 

Methodology
Local research ethics committee approval was obtained along with the agreement of the lead consultant in the renal unit. Data were collected using a documentary method, which meant obtaining the relevant information from the renal unit database.

 


 

Patients commencing renal replacement therapy (RRT) between January 1, 1996, and December 31, 2000, were identified and included in the study. Data obtained from the database included information on age; gender; ethnicity; date of referral; and date of start of treatment.

 


 

The data had been collected routinely by renal unit staff since 1996 and entered into a specific renal unit database, which can be accessed only by named staff. We had concerns about the validity of the data, as inaccurate information can sometimes be recorded. Many patients were, however, known personally to the authors, who were able to validate much of the data; manual checks of notes were undertaken if there were any doubts about the information.

 


 

Late referral was determined by the amount of time a patient had spent in the care of a nephrologist before starting haemodialysis or peritoneal dialysis - RRT. In our renal unit, a minimum of three months is considered necessary to prepare patients for RRT physically, psychologically and educationally. Those patients whose condition required starting RRT within three months of referral to a nephrologist were therefore classified as late referrals.

 


 

Statistical analysis was carried out using Epi-info 6, version 6.04b (World Health Organization/Centers for Disease Control and Prevention). A quantitative method was used to identify whether the variables of age, gender and ethnicity affected the timing of referral. For statistical purposes, age is an interval (categorical) data set that uses a scale of 10-year intervals, starting at 30 years and going up to 90 years, while gender and ethnicity are nominal data sets. Since this study is sociological in nature, statistical significance was set at the 10% (0.1) level.

 


 

Results
During the study period, 494 people commenced RRT, 329 (66.6%) of whom were early referrals. Two hundred and ninety (59%) were male and the age range was 16 to 89 years, with a mean age of 60; ethnically, 341 (69%) were white, 93 (19%) Afro-Caribbean and 38 (8%) Asian. Diabetes was the most prevalent primary renal disease, affecting 156 (32%) of the cohort, followed by diseases of uncertain aetiology (95; 19%), pyelonephritis (25; 5%), and adult polycystic kidney disease (20; 4%).

 


 

Gender was not a significant factor in the timing of referral for either the group as a whole, with 101 (35%) men being referred late compared with 64 (33%) women, or the group when stratified by individual ethnic groups. There was no statistical difference between the mean ages of the early and late referral groups. When the group was stratified into 10-year age bands, people under 40 years of age were statistically more likely to be late referrals than those over 60 years old. The relative risk of being referred late reduced with increasing age (Figure 1).

 


 

Of the early referral group, 222 (67%) were white, 69 (21%) Afro-Caribbean, 23 (7%) Asian and 15 (5%) of other ethnicity. One hundred and nineteen (72%) of the late referrals were white, 24 (14%) Afro-Caribbean, 15 (9%) Asian and 7 (4%) of other ethnic origin. Afro-Caribbeans were statistically less likely to be late referrals than whites (p=0.09) and less likely than all the other ethnic groups combined (p=0.08) (Figure 2).

 


 

Discussion
This study does not identify patients who were never referred to the renal department, with the implication that the findings of this study should be viewed with some caution. It could be that elderly and Afro-Caribbean patients tend to be either referred in good time or not at all.

 


 

This study does not distinguish between avoidable and unavoidable late referrals. Avoidable late referrals are those where the disease was identified some time before referral or when the patient was at high risk of renal disease.

 


 

People referred for medical care immediately they presented, who had neither a previous history of nor a predisposition towards renal disease, could be deemed to be unavoidable late referrals. The study identified the proportion of late and early referrals to the renal unit during the research period and described and compared the demographic variables of the two groups. The proportion of people found to be late referrals for RRT was similar to that in the majority of recent studies (Arora et al, 1999; Roubicek et al, 2000). In this cohort there was no significant difference in timing of referral between genders. The study demonstrated that elderly and Afro-Caribbean patients were more likely than any other group to be referred for nephrological care at an early stage of disease.

 


 

The findings of this study are something of a surprise, since much recent literature suggests that older people and those from ethnic minorities are disadvantaged when it comes to access to medical care. Despite not being able to demonstrate differences between referral and non-referral, the research shows a definite bias towards early referral of Afro-Caribbeans and older people.

 


 

It is possible that timely referral is the result of increased awareness of the prevalence of renal disease among older people and ethnic minority groups. The high prevalence of diabetes (a major cause of renal disease) and hypertension (a cause and sign of renal disease) among ethnic minority groups may mean that these patients access health-care services earlier and are correspondingly referred earlier for nephrological care.

 


 

This was a pilot study to investigate health inequalities. It does not and cannot answer all the questions relating to this vast topic. Further research is needed into all aspects of referral and non-referral. This study did not support the idea that older people and ethnic minorities who are referred for nephrological care are discriminated against. Indeed, these patients stood a better chance of being referred early and, therefore, of having better survival rates.

 


 

Early identification of renal disease requires improvements in how we screen population groups at risk (Ellis and Cairns, 2001). Improved access to nephrological care requires better understanding among health professionals that renal disease can affect anyone. Nurses, especially those in general practice, are well placed to identify early renal disease (Ellis and Magee, 2001).

 


 

This study demonstrates that inequalities in access to health care do not always reflect the stereotype. It highlights the fact that health-care professionals need to be aware that their own biases and practices may disadvantage some social and ethnic groups, but not necessarily those we would anticipate.

 

 

Arora, P., Obrador, G.T., Ruthazer, R. et al. (1999) Prevalence, predictors and consequences of late nephrology referral at a tertiary care centre. Journal of the American Society of Nephrology 10: 1281-1286.


Davey, B., Gray, A., Seale, C. (eds). (1995) Health and Disease: A reader. Milton Keynes: Open University Press.


Department of Health and Social Security. (1980) Inequalities in Health: Report of a research working group (the Black report) London: DHSS.


Department of Health. (1998) Independent Inquiry into Inequalities in Health (Acheson report). London: The Stationery Office.


Doll, R., Hill, A.B. (1964) Mortality in relation to smoking: ten years’ observation of British doctors. British Medical Journal 1: 1399-1405.


Ellis, P., Reddy, V., Bari, N., Cairns H. (1998) Late referral of end-stage renal failure. Quarterly Journal of Medicine 91: 727-732.


Ellis, P.A., Cairns, H.S. (2001) Renal impairment in elderly patients with hypertension and diabetes. Quarterly Journal of Medicine 94: 261-265.


Ellis, P.A., Magee, R. (2001) Screening for renal disease: the role of the general practice nurse. Professional Nurse 17: 1, 69-72.


Innes, A., Rowe, P.A., Burden, R.P., Morgan, A.G. (1992) Early deaths on renal replacement therapy: the need for early nephrological referral. Nephrology Dialysis and Transplantation 7: 467-471.


Ionescu, M.V., Carey, F., Tait, I.S., Steele, R.J.C. (1998) Socio-economic status and stage at presentation of colorectal cancer. New England Journal of Medicine (Research Letters) 352: 1439.


Khan, I.H., Catto, G.R.D., Edward, N., Macleod, A.M. (1994) Chronic renal failure: factors influencing nephrology referral. Quarterly Journal of Medicine 87: 559-564.


Perneger, T.V., Whelton, P.K., Klag, M.J., Rossiter, K.A. (1995) Diagnosis of end-stage renal disease: effects of patients’ race. American Journal of Epidemiology 141: 10-15.


Revill, J. (2000) Doctors tell of elderly patients who are left to die. Evening Standard, March 9.


Roderick, P.J., Jones, I., Raleigh, V.S. et al. (1994) Population need for renal replacement therapy in Thames regions: ethnic dimension. British Medical Journal 309: 1111-1114.


Roubicek, C., Brunet, P., Huiart, L. et al. (2000) Timing of nephrology referral: influence on mortality and morbidity. American Journal of Kidney Disease 36: 1, 35-41.

 


 

Health professionals are increasingly aware of the social causes of disease and ill health. In 1842, Chadwick recognised that the working classes had shorter life expectancies than rich merchants (Scambler, 1997), while in 1845 Frederick Engels controversially accused the ruling classes of the day of ‘social murder’ after observing the squalor in which the working classes lived and the detrimental effects this had on their health (Davey et al, 1995).


More recently the Black report (Townsend et al, 1992; DHSS, 1980), The Health Divide (Townsend et al, 1992) and the Acheson report (DoH, 1998) have all shown that inequalities in health are still an issue in the UK.


Fresh impetus to the debate on the social causality of disease has followed the fact that the medical risk factors for disease, such as proof of the association between smoking and mortality, are now increasingly well understood (Doll and Hill, 1964). However, what is less well understood is why some social classes are at greater risk of disease and death than others. Society and, more specifically, public health officials are now asking questions about the issues that underlie social risk factors, such as why certain groups of people smoke.


Social and cultural issues can be used to explain not only the causation of disease, but also the way in which people who are ill are treated. Perneger et al (1995) demonstrated that the diagnosis of primary renal disease was often influenced not by presenting symptoms but by race. When Schulman et al (1999) investigated the reasons for the differences in the use of cardiovascular procedures according to sex and race, they found that these were related not to need but to physician bias.


Socio-economic status may also influence the timing of a person’s decision to present to the doctor. Ionescu (1998) gives the example of people of lower socio-economic status presenting with more advanced colorectal cancer than persons from higher social groups. Social status, ethnicity, gender and age may also affect an individual’s access to health care, as demonstrated by the Acheson report (DoH, 1998).


Social issues and renal disease
There are no data on whether socio-economic factors affect the diagnosis, treatment or timing of referrals of people with renal disease to a nephrologist in the UK. It has been shown, however, that late referral is associated with increased mortality, morbidity and reduced psychological and social functioning (Innes et al, 1992; Ellis et al, 1998; Sesso and Yoshihiro, 1997) (Box 1).


The Afro-Caribbean and Asian population is at increased risk of renal failure owing to diabetes and/or hypertension (Roderick et al, 1994), and there has also been media publicity surrounding the under-treatment of older people (Revill, 2000). These issues prompted us to investigate the effects of age, gender and ethnicity on the timing of referral for nephrological care.


Many late referrals to renal services are unavoidable. These may be cases that are associated with diseases that have acute onset (such as myeloma), or those where the patient presents with highly advanced disease because they have assumed that their symptoms are related to their advanced age. Some late referrals, however, may be the result of missed opportunities for screening in high-risk groups or overlooked biochemical results (Ellis and Cairns, 2001; Khan et al, 1994).


Methodology
Local research ethics committee approval was obtained along with the agreement of the lead consultant in the renal unit. Data were collected using a documentary method, which meant obtaining the relevant information from the renal unit database.


Patients commencing renal replacement therapy (RRT) between January 1, 1996, and December 31, 2000, were identified and included in the study. Data obtained from the database included information on age; gender; ethnicity; date of referral; and date of start of treatment.


The data had been collected routinely by renal unit staff since 1996 and entered into a specific renal unit database, which can be accessed only by named staff. We had concerns about the validity of the data, as inaccurate information can sometimes be recorded. Many patients were, however, known personally to the authors, who were able to validate much of the data; manual checks of notes were undertaken if there were any doubts about the information.


Late referral was determined by the amount of time a patient had spent in the care of a nephrologist before starting haemodialysis or peritoneal dialysis - RRT. In our renal unit, a minimum of three months is considered necessary to prepare patients for RRT physically, psychologically and educationally. Those patients whose condition required starting RRT within three months of referral to a nephrologist were therefore classified as late referrals.


Statistical analysis was carried out using Epi-info 6, version 6.04b (World Health Organization/Centers for Disease Control and Prevention). A quantitative method was used to identify whether the variables of age, gender and ethnicity affected the timing of referral. For statistical purposes, age is an interval (categorical) data set that uses a scale of 10-year intervals, starting at 30 years and going up to 90 years, while gender and ethnicity are nominal data sets. Since this study is sociological in nature, statistical significance was set at the 10% (0.1) level.


Results
During the study period, 494 people commenced RRT, 329 (66.6%) of whom were early referrals. Two hundred and ninety (59%) were male and the age range was 16 to 89 years, with a mean age of 60; ethnically, 341 (69%) were white, 93 (19%) Afro-Caribbean and 38 (8%) Asian. Diabetes was the most prevalent primary renal disease, affecting 156 (32%) of the cohort, followed by diseases of uncertain aetiology (95; 19%), pyelonephritis (25; 5%), and adult polycystic kidney disease (20; 4%).


Gender was not a significant factor in the timing of referral for either the group as a whole, with 101 (35%) men being referred late compared with 64 (33%) women, or the group when stratified by individual ethnic groups. There was no statistical difference between the mean ages of the early and late referral groups. When the group was stratified into 10-year age bands, people under 40 years of age were statistically more likely to be late referrals than those over 60 years old. The relative risk of being referred late reduced with increasing age (Figure 1).


Of the early referral group, 222 (67%) were white, 69 (21%) Afro-Caribbean, 23 (7%) Asian and 15 (5%) of other ethnicity. One hundred and nineteen (72%) of the late referrals were white, 24 (14%) Afro-Caribbean, 15 (9%) Asian and 7 (4%) of other ethnic origin. Afro-Caribbeans were statistically less likely to be late referrals than whites (p=0.09) and less likely than all the other ethnic groups combined (p=0.08) (Figure 2).


Discussion
This study does not identify patients who were never referred to the renal department, with the implication that the findings of this study should be viewed with some caution. It could be that elderly and Afro-Caribbean patients tend to be either referred in good time or not at all.


This study does not distinguish between avoidable and unavoidable late referrals. Avoidable late referrals are those where the disease was identified some time before referral or when the patient was at high risk of renal disease.


People referred for medical care immediately they presented, who had neither a previous history of nor a predisposition towards renal disease, could be deemed to be unavoidable late referrals. The study identified the proportion of late and early referrals to the renal unit during the research period and described and compared the demographic variables of the two groups. The proportion of people found to be late referrals for RRT was similar to that in the majority of recent studies (Arora et al, 1999; Roubicek et al, 2000). In this cohort there was no significant difference in timing of referral between genders. The study demonstrated that elderly and Afro-Caribbean patients were more likely than any other group to be referred for nephrological care at an early stage of disease.


The findings of this study are something of a surprise, since much recent literature suggests that older people and those from ethnic minorities are disadvantaged when it comes to access to medical care. Despite not being able to demonstrate differences between referral and non-referral, the research shows a definite bias towards early referral of Afro-Caribbeans and older people.


It is possible that timely referral is the result of increased awareness of the prevalence of renal disease among older people and ethnic minority groups. The high prevalence of diabetes (a major cause of renal disease) and hypertension (a cause and sign of renal disease) among ethnic minority groups may mean that these patients access health-care services earlier and are correspondingly referred earlier for nephrological care.


This was a pilot study to investigate health inequalities. It does not and cannot answer all the questions relating to this vast topic. Further research is needed into all aspects of referral and non-referral. This study did not support the idea that older people and ethnic minorities who are referred for nephrological care are discriminated against. Indeed, these patients stood a better chance of being referred early and, therefore, of having better survival rates.


Early identification of renal disease requires improvements in how we screen population groups at risk (Ellis and Cairns, 2001). Improved access to nephrological care requires better understanding among health professionals that renal disease can affect anyone. Nurses, especially those in general practice, are well placed to identify early renal disease (Ellis and Magee, 2001).


This study demonstrates that inequalities in access to health care do not always reflect the stereotype. It highlights the fact that health-care professionals need to be aware that their own biases and practices may disadvantage some social and ethnic groups, but not necessarily those we would anticipate.

 

 

Arora, P., Obrador, G.T., Ruthazer, R. et al. (1999) Prevalence, predictors and consequences of late nephrology referral at a tertiary care centre. Journal of the American Society of Nephrology 10: 1281-1286.


Davey, B., Gray, A., Seale, C. (eds). (1995) Health and Disease: A reader. Milton Keynes: Open University Press.


Department of Health and Social Security. (1980) Inequalities in Health: Report of a research working group (the Black report) London: DHSS.


Department of Health. (1998) Independent Inquiry into Inequalities in Health (Acheson report). London: The Stationery Office.


Doll, R., Hill, A.B. (1964) Mortality in relation to smoking: ten years’ observation of British doctors. British Medical Journal 1: 1399-1405.


Ellis, P., Reddy, V., Bari, N., Cairns H. (1998) Late referral of end-stage renal failure. Quarterly Journal of Medicine 91: 727-732.


Ellis, P.A., Cairns, H.S. (2001) Renal impairment in elderly patients with hypertension and diabetes. Quarterly Journal of Medicine 94: 261-265.


Ellis, P.A., Magee, R. (2001) Screening for renal disease: the role of the general practice nurse. Professional Nurse 17: 1, 69-72.


Innes, A., Rowe, P.A., Burden, R.P., Morgan, A.G. (1992) Early deaths on renal replacement therapy: the need for early nephrological referral. Nephrology Dialysis and Transplantation 7: 467-471.


Ionescu, M.V., Carey, F., Tait, I.S., Steele, R.J.C. (1998) Socio-economic status and stage at presentation of colorectal cancer. New England Journal of Medicine (Research Letters) 352: 1439.


Khan, I.H., Catto, G.R.D., Edward, N., Macleod, A.M. (1994) Chronic renal failure: factors influencing nephrology referral. Quarterly Journal of Medicine 87: 559-564.


Perneger, T.V., Whelton, P.K., Klag, M.J., Rossiter, K.A. (1995) Diagnosis of end-stage renal disease: effects of patients’ race. American Journal of Epidemiology 141: 10-15.


Revill, J. (2000) Doctors tell of elderly patients who are left to die. Evening Standard, March 9.


Roderick, P.J., Jones, I., Raleigh, V.S. et al. (1994) Population need for renal replacement therapy in Thames regions: ethnic dimension. British Medical Journal 309: 1111-1114.


Roubicek, C., Brunet, P., Huiart, L. et al. (2000) Timing of nephrology referral: influence on mortality and morbidity. American Journal of Kidney Disease 36: 1, 35-41.


Scambler, G. (ed.). (1997) Sociology as Applied to Medicine. London: W.B. Saunders.


Schulman, K., Berlin, J., Harless, W. et al. (1999) The effect of race on physicians’ recommendations for cardiac catheterisation. New England Journal of Medicine 340: 618-626.


Sesso, R., Yoshihiro M.M. (1997) Time of diagnosis of chronic renal failure and assessment of quality of life in haemodialysis patients. Nephrology Dialysis and Transplantation 12: 2111-2116.


Townsend, P., Davidson, N., Whitehead, M. (eds). (1992) Inequalities in Health. The Black Report. The Health Divide. Harmondsworth: Penguin.


Scambler, G. (ed.). (1997) Sociology as Applied to Medicine. London: W.B. Saunders.


Schulman, K., Berlin, J., Harless, W. et al. (1999) The effect of race on physicians’ recommendations for cardiac catheterisation. New England Journal of Medicine 340: 618-626.


Sesso, R., Yoshihiro M.M. (1997) Time of diagnosis of chronic renal failure and assessment of quality of life in haemodialysis patients. Nephrology Dialysis and Transplantation 12: 2111-2116.


Townsend, P., Davidson, N., Whitehead, M. (eds). (1992) Inequalities in Health. The Black Report. The Health Divide. Harmondsworth: Penguin.
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