Pediatr Nephrol (1990) 4:199-201 9 IPNA 1990

Pediatric Nephrology

Occasional survey

The management of end-stage renal disease in underdeveloped countries: a moral and an economic problem C. Saieh-Andonie Hospital Luis Calvo Mackennaand ClinicaLas Condes,AntonioVaras no. 360, Santiago9, Chile

Abstract. There are major problems in providing care for children with end-stage renal failure in underdeveloped countries. It is difficult to employ key workers such as dieticians and social workers because of low pay and other demands for their services. The poor pay of physicians is also a problem and few can afford to devote the time necessary to care adequately for chronically disabled children. In Chile it has not been possible to develop comprehensive kidney failure centres for children. Continuous ambulatory peritoneal dialysis has not been encouraged due to the socio-economic and hygienic conditions of the population but isolated intermittent dialysis has been provided. Transplantation has been restricted due to the shortage of cadaver kidneys but a number of children maintained on hospital intermittent chronic peritoneal dialysis have been transplanted successfully. We believe that underdeveloped countries should develop clear programmes for the treatment of chronic renal failure and in addition initiate screening for renal diseases in the population so that early detection of renal disease, for instance in relation to urinary tract infection, can prevent progression to renal failure.

Key words: End-stage renal disease - Chile

The social and economic background Modern medicine, almost daily, finds new sophisticated techniques and therapies which prolong life. However, the high cost is not always affordable by those who need treatment in order to survive. Thus, in the underdeveloped countries medical doctors have to deny dialysis or transplant to patients since hospitals have only limited resources and other priorities. There is little incentive to devote costly resources to a relatively small number of patients with chronic diseases of low prevalence [1].

In some countries, including Chile, there have been isolated experiences with dialysis programmes developed through personal efforts or with private funding, but the existence of a programme does not mean that it is necessarily efficient [2]. The child with a chronic disease is not only unhealthy but may also miss a great deal of schooling, lacks independence and has to visit hospital frequently all circumstances which may cause a feeling of hopelessness regarding the future. Psychological support of such children and families is essential [3, 4]. The social worker is required to solve problems, such as paying for medications, cost of laboratory tests, food supplies or even a minimum standard of living. The social workers themselves are often poorly paid. As an example, a full-time social worker in a hospital in our capital city with 20 years' experience earns approximately 300 US dollars per month and takes care of a population of approximately 180,000 inhabitants, interviews 20 patients daily in the office plus one or two home visits and attends various meetings with other members of the health team in the hospital. Currently, in Chile there is no financial help for children with end-stage renal disease, and medical care is dependent on what these children can obtain from private or charitable institutions. The task of developing health policies which would give access to the technological advances of dialysis and transplant to a larger group of patients is partly ethical, and the physician cannot and must not be the arbiter of life or death under these circumstances. No authority may legitimately impose this tragic decision on the physician's shoulders [5]. A nephro-urological team is necessary to communicate with the patient and the family and help to solve the emotional problems of the children, make them understand their chronic condition, the need for special diets and eventually to accept dialysis and transplantation. A long-standing regular relationship is needed, with long and quite regular visits to the doctor [6, 7]. It is unlikely, however, that the physician will be able to devote the time needed to these chronic and complex patients when there are at least four other patients to be seen per hour, in small offices that

200 Table 1. Educationaland socio-economicbackgroundof parents Mother

Father

15 5 0 2 0 22

14 4 1 0 3 22

Educational attainment

Basic Basic High Illiterate Unknown Total Activity

Homeactivities Dealer Maid Stylist Industrialworker Universitydegree Handcraft Technician Administrative Unknown

1

2 2 1 12

12 2 1 1

2 3

are totally inadequate, without the ancillary personnel (nurses, dietitian, social worker, physician assistants, etc) and with the pressure to obtain from private laboratories or clinics some of the more complex laboratory tests that many of these patients require. In addition, the salaries earned by the physicians are too low, and usually they have to work in several places and for long hours (1416 h/day), in order to obtain the minimal income to maintain their families. As an example of this problem, a physician with 5 years of practice and working full time has a monthly income under 400 US dollars. There is some evidence that outpatient treatment for children with chronic diseases is more efficient than inpatient care [8], but in the third world countries it is difficult to implement such policies because of problems of access to specific health centres, and the cost and uncertainty of transport. Grunberg and Verocay [9] developed such a programme of chronic dialysis in an underdeveloped country, but the high cost restricted the number of patients who could have access to treatment. Dietary management may slow the progression of chronic renal failure, improve the uraemic symptoms and delay the need for dialysis or renal transplant and, hopefully, improve growth [10-13]. In many hospitals nutritionists are not available, and in any case have to care for inpatients, and have little time left for the complex problems of a renal patient. Special foods are difficult to buy, are expensive, and the extra time required for preparation may not be available as the mother has to work outside the home to sustain the family.

Chile

In Chile, adult haemodialysis units have been developed efficiently, and there are several centres with excellent results in both dialysis and transplantation. However, it has not been possible to develop comprehensive kidney failure centres for children. Only recently have health authorities

accepted the importance and magnitude of this problem, and there is now a growing concern to provide financial support for paediatric dialysis centres. Continuous ambulatory peritoneal dialysis has not been encouraged due to the socio-economic and hygienic conditions of the patients; however, there are some isolated programmes of intermittent chronic peritoneal dialysis and haemodialysis. Fierro et al. [14] reported their experience with four paediatric patients between the ages of 8 and 12 years in whom haemodialysis was well tolerated and presented few complications. Rehabilitation was successful in most of these patients; three were transplanted and one was awaiting cadaveric-donor renal transplantation. Garcia and Duclos [15] developed a programme of intermittent peritoneal dialysis with eight patients and emphasized the need for adequate selection of patients. Patients with psychological or psychiatric problems should not be included; an adequate social and cultural background with good hygiene was essential and adequate hospital support was required. Saieh et al. [ 16] developed a protocol for hospital intermittent chronic peritoneal dialysis performed manually. Between 1983 and 1985, eight children (two males, six females) were treated between 3 years and 12 years of age. Five of these children had a renal transplant and three are awaiting cadaveric transplant; they were maintained on dialysis for approximately 2 months without serious complications except peritonitis which occurred in one patient and responded well to treatment. There was very good rehabilitation and such treatment is recommended as an alternative for hospitals with limited resources because the technique is simple, and the costs are lower. Similar experience has been published using automated cycling peritoneal dialysis [17]. The shortage of cadaver donors has led to the restriction of transplantation to adults or only very selected children [ 18]. Criteria of exclusion for renal transplantation in children have been mental retardation or psychiatric complications, malignant disease or multisystem involvement, nephropathies that have a high incidence of recurrence in the transplanted kidney, and others that are associated with hereditary diseases. Socio-economic conditions require that the family must have a good house with adequate standards, including one bed for each person in the family group, and the floor must be covered. Of 22 children transplanted, 40% had an abnonnaI family situation either because of the parent's separation (23%) or because the children were not legitimate (18%). Table 1 shows the background of the children transplanted in this medical centre. Despite the relatively low school attendance and the type of work of the parents of these children, there was great interest and motivation for their care once transplanted. The 31 renal transplants in 27 children reported in 1984 [2] represented only 10% of the cases of end-stage renal failure. The children were aged between 2 and 16 years with an average of 10 years. Congenital anomalies of the urinary tract (including vesicoureteral reflux) were found in 41% of the patients; 33% had some type of glomerulopathy; and in 26% the diagnosis of the cause of chronic renal failure was not determined. Six children were trans-

201 p l a n t e d without p r e v i o u s dialysis. O n l y 16% had an adequate nutritional status; the donors were the m o t h e r in 66% o f the patients, and the father in 10%. T h e n u m b e r o f c a d a v e r donors is still v e r y low, since the law in Chile does not a l l o w e a s y access for organ retrieval. In order to b e a donor, each p e r s o n m u s t be r e g i s t e r e d b y a p u b l i c n o t a r y and m a k e a s w o r n d e c l a r a t i o n c o n c e r n i n g intention to be an organ donor; it is i m p o r t a n t to note that there are o n l y a few notaries in the country that can h a n d l e this procedure. In addition, overall e d u c a t i o n with r e s p e c t to the i m p o r t a n c e of organ d o n a t i o n is lacking. The patient survival rate up to p u b l i c a t i o n was 82% at 6 months, 68% at 2 years and 54% at 5 years. The actuarial graft survival was 79%, 65%, 60% and 4 8 % , respectively. T h e similarity o f patient and graft survival was c a u s e d b y a b s e n c e o f dialysis facilities for those in w h o m the transplant failed. W e strongly b e l i e v e that countries like ours should i m p l e m e n t clear health p o l i c i e s to d e v e l o p p r o g r a m m e s for the treatment o f chronic renal failure, including p r e v e n t i v e aspects such as screening for renal diseases. F o r e x a m p l e , detection o f urinary-tract infection in infants can help detect u r o l o g i c a l a n o m a l i e s and v e s i c o u r e t e r a l reflux, w h i c h are a m o n g the m o s t c o m m o n causes o f chronic renal failure in our e x p e r i e n c e and that o f others [ 1 8 - 2 0 ] . G r e a t e m p h a s i s should b e p l a c e d on the creation o f a national centre for dialysis and transplant, with adequate support (both technical and e c o n o m i c ) in order to offer the p o s s i bility o f treatment to c h i l d r e n in any area o f the country, together with the d e v e l o p m e n t o f r e g i o n a l centres as n e e d e d in order to d e c e n t r a l i z e s o m e o f these therapies. It is e s t i m a t e d that each y e a r there are 4.3 n e w c h i l d r e n with e n d - s t a g e renal d i s e a s e in the m e t r o p o l i t a n area o f Santiago [21 ], and the p o s s i b i l i t y o f treatment and rehabilitation is both the right o f the patient and the d u t y o f our society.

Acknowledgement. I am very grateful to Dr. G. ZiUeruelo of the Children's Hospital Centre, University of Miami, USA, for reviewing the manuscript.

References 1. Saieh AC (1983) Tecnolog~a avanzada y restricci6n econ6mica: iun dilema morN? Rev Chil Pediatr 54:79

2. Warner KE, Luce BR (1982) Principles of the methodology of CBACEA. In: Warner KE, Luce BR (eds) Cost-benefits and cost-effectiveness analysis in health care. Principles, practice and potential. Michigan Health Administration Press, Michigan, p 52 3. Anger D (1975) The psychologic stress of chronic renal failure and long term hemodialysis. Nutr Clin North Am 10: 449-460 4. Sorvenson ET (1972) Group therapy in a community hospital dialysis unit. JAMA 221:899-901 5. C6digo de Etica (1986) Artfculo 27. Colegio Mrdico (A. G.) de Chile. Santiago, Chile 6. Fried FE, Danks LR, Beavert CS (1976) Preventing emotional problems in a dialysis team. Dial Transplant 5:68 -72 7. Levy NB, Wynbrandt GD (1975) The quality of life on maintenance hemodialysis. Lancet I: 1328 - 1330 8. "Ad Hoc" task force on home care of chronically ill infant, children and adolescents, with chronic disease. Pediatrics 74:434-439 9. Grunberg J, Verocay MC (1987) Pediatric CAPD in developing countries. In: Fine RN (ed) Chronic ambulatory peritoneal dialysis (CAPD) and chronic cycling peritoneal Dialysis (CCPD) in children. Martinus Nijhoff. Boston, p 21 10. Saieh CA (1989) Nutrici6n e insuficiencia renal crrnica. Rev Chil Pediatr 60 [Suppl 1]: 29-31 11. Salusky IB, Fine RN (1986) Nutritional factors mad progression of chronic renal failure. Adv Pediatr 33: 149-158 12. Giovannetti S (1985) Dietary treatment of cllronic renal fallme: why is not used more frequently. Nephron 40: 1-12 13. Wassuar SJ, Abitol C, Alexander S, Conley S, Grupe WE, Holliday MA, Rigden S, Salusky IB (1986) Nutritional requirements for infants with renal failure. Am J Kidney Dis 7:300-305 14. Fierro A, Saieh C, Leniz B, Aravena N, Ceballos P, Horta S (1990) Hemodialisis pediatrica, una alternativa real en el tratamienn to de la insuficiencia renal crdnica terminal. Rev Chil Pediatr (in press) 15. Garc~a RE, Duclos J (1984) Dialisis peritoneal cr6nica intermitente. Una alternativa para la insuficiencia renal cr6nica terminal. Rev Mrd Chile 112: 139-146 16. Saieh C, Cordero J, Baeza J, Rodrfguez E, Hern~ndez (1985) Manual intermittent peritoneal dialysis: a successful alternative to CAPD in developing countries. Petit Dial Bull 5:206 17. Gonzfilez F, Gase O, Fuentes L, Elgueta A (1985) Difilisis peritoneal intermitente con cycler autom~iticoen el nifio. Pediatrfa 28: 14-18 18. Martfnez P, Martinez L, Vaccarezza A, Garcfa MA, Pinto C (1983) Experiencia en transplantes renales en nifios. In: Saieh C, Urizar RE, Gordillo G (eds) Nuevas avances de nefrologfa pedi~itrica, Bello, Santiago, pp 191-201 19. Martfnez L, Martinez P, Vaccarezza A, Rodrfguez L, Garcfa A, Pinto C (1984) Experiencia en transplante renal en nifios. I. Congreso Latinoamericano de Nefrologfa Pedifitrica. Vifia del Mar 20. Henning P, Tomlinson L, Ridgen SPA, Haycoock GB, Chanther C (1988) Long term outcome of treatment of end stage renal failure. Arch Dis Child 63:35 -40 21. Rama de Nefrologfa. Sociedad Chilena de Pediatrfa (1983) Insuficiencia renal cr6nica. Encuesta. Rev Chil Pediatr 54:141 - 143

The management of end-stage renal disease in underdeveloped countries: a moral and an economic problem.

There are major problems in providing care for children with end-stage renal failure in underdeveloped countries. It is difficult to employ key worker...
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