Infant Dialysis: Is The Price Still High?

Written by Neveen A Soliman on Sunday, 29 September 2013. Posted in OLA Blog

Infant Dialysis: Is The Price Still High?
The recent paper in Pediatric Nephrology Journal by Lantos and Warady takes you smoothly through the whole story of infant dialysis and renal replacement therapy that started in the sixties of the last century [1].
The authors echo the concerns of many doctors and nurses working in the field of infant dialysis questioning the appropriateness of this aggressive approach to what had been considered as a uniformly fatal disease.
On one end of the spectrum in an early study in 1978, Hodson and colleagues report 21 patients in which dialysis started in the neonatal period and transplantation performed at a mean age of 3 years. Four children died, 5 lost their initial graft, and the overall patient survival at 4 years of age was 76% [2].
Despite of all the ethical concerns and the seemingly insurmountable hurdles, more and more centers began to offer dialysis to the increasing numbers of diagnosed and referred infants as a direct result of enhanced perinatal care and antenatal diagnosis of kidney diseases, primarily Congenital Anomalies of the Kidney and Urinary Tract (CAKUT).
With gained experience and careful study, the outcome partially improved. In 2007, Rees reported Great Ormond Street Hospital (GOSH) in that respect. In 20 infants on PD, 14% had developmental delay; 7%, congenital heart disease; 3%, gut problems; 2%, hypothyroidism; 2%, respiratory problems; and 2%, blindness and deafness [3].
So, is RRT justified in infants?
Whether to initiate RRT in an infant is one of the most difficult questions facing pediatric nephrologists. Moreover, the ethics surrounding withdrawing or withholding treatment have been extensively discussed. That decision is even more complex for infants with other co-existing congenital anomalies ; approximately one third of the infant renal failure population [4].
Whereas some families opt for intensive management of their infant, with dialysis and early transplantation, other families may decide that they do not wish to inflict further pain and suffering on their infant, and they choose conservative management rather than RRT. Having said that, down the road parental bonding with an infant could be an issue and can lead to reversal of a decision for conservative management, by which time irreversible damage to growth and development may have occurred [3].
For infant dialysis to achieve the best possible outcomes, attention must be paid to nutrition, growth and development, prevention of renal bone disease, preservation of dialysis access sites and the peritoneal membrane (major issue in many centers), and above all provision of utmost support to the families of these infant who will endure considerable suffering in this journey.
In 1970, Reinhart wrote "I feel that programs of chronic dialysis and renal transplantation in children should be carefully evaluated, not in terms of gross survival but in parameters of meaningful growth and development-living. We may find the price the child pays too great at present" [5]
The question remains, is the price still high?
1. Lantos JD, Warady BA. The evolving ethics of infant dialysis. Pediatr Nephrol. 2013 Oct;28(10):1943-7. doi: 10.1007/s00467-012-2351-1. Epub 2012 Nov 7
2. Hodson EM, Najarian JS, Kjellstrand CM, Simmons RL, Mauer SM. Renal transplantation in children ages 1 to 5 years. Pediatrics. 1978;61(3):458-64
3. Rees L. Long-term peritoneal dialysis in infants. Perit Dial Int. 2007;27 Suppl 2:S180-4
4. Shooter M, Watson A. The ethics of withholding and withdrawing dialysis therapy in infants. Pediatr Nephrol 2000 ; 14:347 -51
5. Reinhart JB. The doctor's dilemma: whether or not to recommend continuous renal dialysis or renal homotransplantation for the child with end-stage renal disease. J Pediatr. 1970;77(3):505-7
Neveen A Soliman ElShakhs

Professor Neveen A Soliman ElShakhs MD, PhD

OLA Director

Dr. Neveen A Soliman ElShakhs is a Professor of Pediatrics and Pediatric Nephrology, Kasr Al Ainy...
Posted: 4 years 4 months ago by elnahas #11548
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Thank you Neveen for this very challenging Blog.
It raises a number of questions:

1. Health Economics
2. Provision of care for the terminally ill
3. Parental pressure on healthcare providers.

1. Health economics:
In terms of health economics I suspect that RRT for infants with multiple disabilities is not cost effective and hardly adds value in terms of QALY. The cost per QALY gained would certainly exceed $50,000 which makes not cost effective in high economies and totally prohibitive in lower economies. Low and middle economies have different healthcare burdens and priorities and RRT for infants with CKD and multiple co-morbidities and disabilities is not one of them.

2. Healthcare provisions and dialysis for the terminally ill:
I guess it is the same answer as 1. RRT and dialysis for the terminally ill is not justifiable as it doesnt improve the overall outcomes, hardly prolong meaningful life and seldom provide the quality of life that warrants such therapy.

3. More difficult is to deal with patients as individuals and not as a group; so how to justify denying the prolongation of life by RRT to parents who want such available technique to be applied to their offspring?
Here time and effort and compassion need to be taken to bring the parents on board with the medical decision and its implications. Parental pressure has to be taken into consideration but cannot guid medical care and resource management.

Finally, like with everything in medicine, it is never black or white...but shades of grey...
So one cannot rule out all infants with ESRD from RRT; take the example of congenital nephrotic syndrome who can be successfully transplanted.
We cannot on the other hand, offer RRT to infants with severe multiple disabilities, comorbidities and short life expectancy.
One more, we as doctors have to take a number of factors into consideration and reach decision in a multidisciplinary team fashion with the infants family on board.

Also to be considered is the centre experience and facility with such provision of care.
Posted: 4 years 4 months ago by elnahas #11555
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Muawia Ahmed
Its a difficult decision ,now a days I am treating 7 days old male with diagnosis of MSUD brougt to picu in severe CNS depression & aponea,baby was intubated started on continous peritoneal dialysis after 4 days baby improved dramatically .now on room air .off dialysis tolerating feeding well with special formula .waiting for plasma leucine level after dialysis however. its very early to evaluate long term sequlae.On the other hand chronic dialysis is much more difficult option for us and patient care givers.

Neveen ElShakhs
Thanks Dr. Muawia Ahmed for sharing! Well, that is the sort of situation I am raising in the blog. Decision making in such infants should involve the parents and caregivers and has to be patient centered assessment taking into consideration pivotal issues as: co-morbidities, potential for adequate growth and development, etc...

Also check the above Blog on OLA and its cited full text interesting articles for additional and comprehensive reading as to infant dialysis

The question remains, is the cost of infant dialysis still high at the expense of life quality and adequate growth and development?

Muawia Ahmed
Thanks DR Neveen ElShakhs as you mentioned the most difficult situation we are facing in practice is when we come to discuss renal replacement options with the parents and care givers as the final decision is a share one - we put it clearly for parents in this way 1-to do nothing 2-to support the child till the time he or she requires dialysis and stop there 3-to give full chance( dialysis and prepare for Tx down the road). with all options we have to explaine to parents and care givers all the vital concerns you raised and our expectations,over all the decision should be individualized according age, nature of primary renal disease ,associated co-morbidities,etc ..
Posted: 4 years 4 months ago by arif.khwaja #11588
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thanks Neveen for a fascinating blog...
I suspect like adult nephrology the clinician will tend to err on the side of intervention rather than not.
The observation from Reinhart seems just as relevant to decisions about starting RRT in the elderly
Posted: 4 years 4 months ago by nsoliman #11591
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Many thanks Professors Meguid & Arif for your most valuable and comprehensive comments!

It is a tough decision and many aspects has to take into consideration indeed.

Agree, it resembles initiating RRT in the elderly in a sense!
Posted: 4 years 4 months ago by nsoliman #11592
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Looking forward to shared experiences of OLA colleagues in this respect!
Posted: 4 years 4 months ago by Hanan_Abdelaziz #11653
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thanks dear prof ,for sharing this every day question asked to us (as a pediatric nephrology)by the others
as said before it is due to improvement in prenatal diagnosis ,general awarness of the parents ,improved survivsl we had a lot of infants waiting to start RRT ,with most of their parents generally agree to do that and transplantation is the ideal treatment for them
preparing the family should start as early as diagnosis was made ,to had good environment needed for PD which is the most safe ,easy to start , with sheap cost.
however attention should be paid to the other co-morbidities ,the most important NUTRITION of these infants who may grow slower ,as their growth is helping in transforming from the station of dialysis to TRANSPLANTATION so:
cooperation between the nephrology ,urology ,dietition is needed
problems faced in PD like infection (most of our faced), need to temporarly HD may be needed
should be our concern to solve
Posted: 4 years 4 months ago by nsoliman #11681
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Thank you very much Hanan for sharing your experience in infant dialysis.

Agree, major concerns include nutrition, growth and developmental delay, and exceptionally high rates of infection in many parts of the world.

Withdrawing or withholding treatment remains a major and tough issue in this respect, I can imagine you have been through this situation a lot given your experience in peritoneal dialysis in particular!

Proper counseling of parents is extremely helpful to families, nurses, and doctors. We recently counseled the family of an infant with syndromic CAKUT (associated cardiac, skeletal, and neurological anomalies) going through diagnosis, prognosis, recurrence risk, challenges, concerns, withholding dialysis, ...etc.

It is very challenging, yet rewarding experience, but unfortunately it never gets any easier particularly when it comes to fist time parents!!!!

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