ESRD in Guatemala and a Model for Preventive Strategies: Outlook of the Guatemalan Foundation for Children with Kidney Diseases

Abstract

The rapidly growing burden of chronic renal failure (CRF) is a major public health problem that will stretch the health care system of all countries, especially those that are not yet industrialized. It is estimated that only 35% of Guatemalan patients with end stage renal disease (ESRD) would be diagnosed and treated, and unlike many developed countries, the age of presentation in 60% of the patients is before the forth decade. Therefore, the cost of death and disability due to a CRF in this young population is particularly profound, resulting in reduced productivity and economic growth of the country. It is also estimated that 400 pediatric cases develop progressive kidney disorder (neurogenic bladder, reflux nephropathy, chronic glomerulonephritis) annually, which, if left untreated, could result in ESRD in adulthood. This reality justifies initiatives such as FUNDANIER (Foundation for Children with Kidney Diseases), whose mission is to offer comprehensive nephrological treatment to children and adolescents and enable health care providers to prevent ESRD by early identification, diagnosis, and timely referral of children with risk factors. Efforts should be taken to better involve pediatricians and pediatric nephrologists in the fight against the burden of CRF.

Keywords:

• chronic renal failure
• prevention
• renal foundation

The rapid growth of chronic renal failure (CRF) is a devastating public health problem that will tax the health care system of all countries. This is especially true of developing countries, like Guatemala, where the challenge for health care providers is to prioritize finite health care resources in the face of many competing demands, several of which are viewed in the short term as more urgent or widespread than kidney diseases. As a result, it is estimated that only 35% Guatemalan patients with end stage renal disease (ESRD) would be diagnosed and treated.[1]

A large segment of Guatemalan population is young,[2] and, unlike many developed countries, the age of presentation of ESRD in 60% of the patients is before the forth decade. Therefore, the cost of death and disability due to a CRF in this young population is particularly profound, resulting in reduced productivity and economic growth of the country. Although there is no epidemiological study stating as much, it is assumed that because of the age of presentation of ESRD, causes other than diabetes and hypertension are chiefly responsible for CRF (e.g., chronic glomerulonephritis and urological problems such as reflux nephropathy).

In the past, there has been no formal program that specifically focuses on the prevention of CRF. FUNDANIER (Foundation for Children with Kidney Diseases), however, offers comprehensive nephrological treatment to children and adolescents and enables health care providers to prevent ESRD by early identification, diagnosis, and timely referral of children with risk factors for ESRD.

Pediatricians are a key factor in preventing CRF in countries such as Guatemala, which is characterized by both a young population and diseases that can lead to ESRD through hyperfiltration injury.

WEALTH AND HEALTH IN GUATEMALA

Guatemala is situated in Central America, southeast of Mexico. It has a population of 12 million, of whom 60% are younger than 20 years of age and 37% (4.2 million) are younger than twelve years of age. Forty-two percent of the general population is Mayan descendent (among whom 23 languages are spoken), and 55% live in the rural areas.[2]

The Guatemalan global human development index (0.631) is number 121 of 176, the second-to-last in Latin America.[3] Fifty-seven percent of Guatemalans live below the poverty line, represented by an income of less than US $1 per day, and one out of five Guatemalans live well below that (in extreme poverty). In addition, 30% of Guatemalans cannot read nor write.

Life expectancy in Guatemala is 64.8 years,[4] far less than the average for Latin America (70.5 years).[5] Forty-four children out of 1000 live newborns will die before their first birthday, and 59 will die before their fifth birthday. Fifty percent of Guatemalan children suffer from chronic malnutrition, and 15% of newborns have low birth weight.[4]

END-STAGE RENAL DISEASE IN GUATEMALA

Guatemala does not have a national registry of renal diseases, but data provided to the Latin American Registry (Annual Report 2002) states a real prevalence of 150 pmp of patients on renal replacement therapy (RRT), compared to a theoretical prevalence of 450 pmp (the average for Latin America).[1] As there is no reason to believe that Guatemala would have a lower prevalence than the rest of Latin America, it is assumed that only 35% of ESRD patients are diagnosed and treated.

A recent survey of 190 patients showed that 60% of patients on RRT are younger than 40 years, with the following as leading causes of ESRD: hypertension (30.7%), glomerulonephritis (25.3%), diabetes (18.5%), polycystic kidney disease (5.82%), and unknown diagnosis (20%).[6] Peritoneal dialysis is the predominant modality of RRT (73 pmp), followed by hemodialysis (51 pmp) and transplantation (30.4 pmp).[1] In Guatemala, there are only 20 nephrologists to serve a population of 12 million, one of the lowest ratios in Latin America.

Based on a pediatric population of 6 million, one would anticipate 100 new ESRD cases per year. There are no current data on the number of children on dialysis; however, in the last ten years, an average of only five transplants per year have been performed in this population. It is also estimated that 400 pediatric cases develop progressive kidney disorder (neurogenic bladder, reflux nephropathy, chronic glomerulonephritis) annually, which, if left untreated, could result in ESRD in adulthood. It is also worth mentioning that there are only four pediatric nephrologists to serve a pediatric population of 6 million, the lowest ratio in Latin America.[7]

OUTLOOK OF FUNDANIER

FUNDANIER (Foundation for Children with Kidney Diseases) was created in May 2003 by parents of children with chronic kidney diseases. Its mission is to offer comprehensive nephrological treatment to children and adolescents and to enable health care providers to prevent ESRD by the early identification, diagnosis, and timely referral of children with risk factors for ESRD.

In order to achieve its goals, FUNDANIER has three main cores:

1. Educational activities. To improve the skills of the personnel serving these children, FUNDANIER has joint efforts with the International Society of Nephrology (ISN) and the University of Utah, via the ISN Sister Center Program. As a result, a pediatric nephrologist, a nephropathologist, a pediatric renal dietitian, a child life specialist, and a pediatric urologist, have received training and are now working at the foundation. Also, two pediatricians are now undertaking an ISN-funded 24-month fellowship in pediatric nephrology and will return to Guatemala upon completion of their training.

   Through its medical director, FUNDANIER has also been involved in educational activities, targeting primary care doctors, general pediatricians, residents, and medical students. Eight workshops on “Early Identification of Kidney Diseases in Children” have been focused on the burden of CRF in Guatemala, concept of hyperfiltration injury, practical screening tools (blood pressure, urinalysis, and growth chart), identification of children at risk, and appropriate diagnosis and management of urinary tract infection in children.

   An agreement has been signed between FUNDANIER and the national university that will facilitate the revision of the curriculum of the school of medicine and also the creation of a training program in pediatric nephrology.

2. Patient service. The in-patient service is run at one of the tertiary care public hospitals in Guatemala City (Roosevelt Hospital), where the majority of renal patients are referred from the provinces. The Pediatric Nephrology ward has five beds, with an average occupancy of 80%. The three most frequent diagnoses are CRF, reflux nephropathy, and nephrotic syndrome. FUNDANIER provides the ward with those medications and materials that are not available through the public health system (i.e., metilprednisolone, cyclophosphamide, enalapril, and biopsy needles). An outpatient clinic is held three times a week in which 150 patients on average are seen each month. On each visit, the patients are seen by the nephrologists, the renal dietitian, the child life specialist, and when needed, the pediatric urologist. The most frequent diagnoses are CRF (pre-ESRD) due to neurogenic bladder, reflux nephropathy, chronic glomerulonephritis, post-nephrectomy problems due to Wilm's Tumor, kidney transplant follow-up, juvenile diabetes, and also HIV nephropathy.

   Supported by FUNDANIER, in 2006, the first pediatric hemodialysis unit in Guatemala will be established and a pediatric kidney transplant program is planned.

3. Research. Three clinical studies have been conducted and presented as posters at different World Congress of Nephrology with the goal of identifying at-risk populations and providing affordable treatment: a) Preventing chronic renal damage in children with neurogenic bladder due to myelomeningocele through the use of clean intermittent catheterization,[8] b) Assessment of function of the solitary kidney in children after nephrectomy due to Wilm's tumor: Guatemalan experience,[9] and c) Adjunct treatment for uremia using gum arabic: Guatemalan experience.[10]

CONCLUSION

In contrast to developed countries, ESRD in Guatemala occurs in a younger population. There is also a large segment of pediatric patients with progressive kidney disorder, which, if left untreated, could result in ESRD in adulthood. Initiatives such as the FUNDANIER in Guatemala give pediatricians a key role in the early diagnosis and prevention of CRF. This is valid for other developing countries as well, and efforts should be taken to involved pediatricians and pediatric nephrologists in the fight against the rapidly growing burden of chronic renal failure.

Dr. Randall Lou-Meda is a recipient of the International Society of Nephrology fellowship training award. The author is grateful to Mrs. Karen Siegler for her thoughtful editorial review and to Dr. Richard Siegler for his comments on the manuscript.

Notes

6. Sánchez-Polo, JV. Tomado de presentación titulada: Epidemiología de la Insuficiencia Renal Crónica en una Unidad de Diálisis de Guatemala. Resultados preliminares