Predicting Chronic Kidney Disease in Children Born Preterm or with Low Birth Weight in India: The Case for a Context-Adapted Clinical Decision Support Tool

1. Introduction

Complications of preterm birth are the leading cause of death among children under five worldwide [1]. India carries the world’s largest burden of preterm birth: about 3 million of the estimated 13.4 million preterm births worldwide in 2020, a national rate near 13% [2]. In the National Family Health Survey-5 (2019–21), about 18% of newborns with a recorded weight weighed under 2,500 g [3]. Survival of these infants has improved sharply with the expansion of SNCUs, newborn stabilisation units and private NICUs, so a growing cohort of Indian children now carries the long-term risks of being born early or small.

The kidney is one of those risks. In a Swedish cohort of over 4 million births, preterm birth was associated with roughly twice the risk of CKD from childhood into mid-adulthood, and about three times the risk after extremely preterm birth [4]. A systematic review found LBW associated with around 70% higher odds of CKD in later life [5]. The mechanism — a reduced and less resilient nephron endowment — is well described [6,7].

These findings matter more in India than almost anywhere. CKD is common, often detected late, and frequently attributed to “unknown” causes [8,9]. Indian newborns have a distinctive “thin-fat” phenotype [10], and Indian birth cohorts link early growth patterns to adult cardiometabolic disease [11] — the same diabetes and hypertension that act as “second hits” on a reduced nephron mass. Adult kidney disease in India may therefore partly begin in the NICU.

Despite this, kidney surveillance after NICU or SNCU discharge is not part of routine Indian practice, and no tool helps clinicians decide which child needs which follow-up. A recent US qualitative study by Sanderson et al. explored how neonatologists, general paediatricians and paediatric nephrologists view CDS tools for CKD risk after preterm birth [12]. Every participant endorsed the need for such a tool, while warning about false reassurance, over-referral and family burden. Those concerns apply with greater force in India, where subspecialty access is thinner and records are often on paper.

This Perspective (a) summarises the evidence linking preterm birth and LBW to CKD, (b) describes the Indian follow-up pathway for at-risk newborns, (c) translates international clinician-perspective findings to Indian conditions, and (d) proposes a tiered, low-cost risk stratification framework and a research agenda.

2. Biological Basis: Low Nephron Endowment and Second Hits

Nephrogenesis is completed by about 34–36 weeks’ gestation, and most nephrons form in the third trimester. A baby born at 28 weeks therefore finishes building its kidneys outside the uterus, under conditions that are hostile to normal development.

• Reduced nephron number. Human nephron number varies about ten-fold between individuals and rises with birth weight [13]. Brenner’s hyperfiltration hypothesis proposes that fewer nephrons lead to single-nephron hyperfiltration, glomerular hypertrophy, hypertension and progressive glomerulosclerosis [14].
• Abnormal postnatal nephrogenesis. In preterm infants, nephrogenesis continues only briefly after birth, and a proportion of the new glomeruli are morphologically abnormal [15,16].
• Intrauterine growth restriction. Being small for gestational age (SGA), common in India because of maternal undernutrition, anaemia and hypertensive disorders of pregnancy, independently reduces nephron endowment [6,7].
• Neonatal acute kidney injury (AKI). In the multinational AWAKEN cohort, which included an Indian centre, neonatal AKI was common and independently associated with death and longer hospital stay [17].
• Nephrotoxic exposure. Aminoglycosides, vancomycin, NSAIDs for patent ductus arteriosus, and contrast add injury; quality programmes such as Baby NINJA show this harm is preventable [18].

The first hit (low endowment) is often silent in early childhood. Clinical CKD typically appears after “second hits”: obesity, type 2 diabetes, hypertension, recurrent AKI or pregnancy [7,19]. Even so, early signs are detectable. In a US cohort of children born extremely preterm, reduced eGFR, albuminuria or elevated blood pressure were already present in a substantial proportion by 2 years’ corrected age [20]. This window between birth and clinical CKD is where prediction and prevention can work.

3. Kidney Follow-Up After NICU and SNCU Discharge in India

India has built strong systems for keeping small and sick newborns alive, but kidney health is not yet part of what happens after they go home. The India Newborn Action Plan drove a nationwide network of district SNCUs and newborn stabilisation units [21]. High-risk newborn follow-up clinics, where they exist, focus on neurodevelopment, retinopathy of prematurity, hearing and growth. Kidney outcomes are seldom tracked.

Care after discharge is split between tertiary NICUs, district hospitals, private paediatricians and community health workers. Rashtriya Bal Swasthya Karyakram (RBSK) screens children from birth to 18 years for the “4 Ds” — defects at birth, diseases, deficiencies and developmental delays — and refers them to District Early Intervention Centres [22]. ASHAs visit preterm and LBW infants under home-based newborn and young-child care programmes. Families carry the Mother and Child Protection (MCP) Card [23]. None of these currently carry a kidney-risk flag.

Table 1. Kidney surveillance after preterm/LBW birth in India: gaps and existing assets.

Domain	Current practice (usual)	Gap	Asset to build on
Discharge documentation	Handwritten or local-software summary	Neonatal AKI, peak creatinine and nephrotoxin courses rarely recorded	Standardised SNCU discharge format; SNCU online reporting
Risk communication	Verbal advice to parents	Families unaware of kidney risk	MCP Card; vernacular counselling by nurses and ASHAs
Blood pressure	Rarely measured before school age	Paediatric cuffs and reference tables often unavailable	Low-cost cuffs; AAP 2017 normative tables [24]
Urine testing	Done only when symptomatic	No routine proteinuria screen	Dipstick costs a few rupees per test
Kidney function	Serum creatinine widely available	Jaffe vs enzymatic variation; adult eGFR equations misused	Bedside Schwartz eGFR [25,26]
Imaging	Antenatal and postnatal ultrasound common	Findings not linked to a follow-up plan	CAKUT flag at discharge
Specialist access	Paediatric nephrologists concentrated in metro tertiary centres	Long travel, out-of-pocket cost	Tele-nephrology; eSanjeevani teleconsultation
Digital records	Mostly paper outside large hospitals	No longitudinal record across facilities	ABHA ID and Ayushman Bharat Digital Mission [27]

Table 1. Kidney surveillance after preterm/LBW birth in India: gaps and existing assets.

Domain	Current practice (usual)	Gap	Asset to build on
Discharge documentation	Handwritten or local-software summary	Neonatal AKI, peak creatinine and nephrotoxin courses rarely recorded	Standardised SNCU discharge format; SNCU online reporting
Risk communication	Verbal advice to parents	Families unaware of kidney risk	MCP Card; vernacular counselling by nurses and ASHAs
Blood pressure	Rarely measured before school age	Paediatric cuffs and reference tables often unavailable	Low-cost cuffs; AAP 2017 normative tables [24]
Urine testing	Done only when symptomatic	No routine proteinuria screen	Dipstick costs a few rupees per test
Kidney function	Serum creatinine widely available	Jaffe vs enzymatic variation; adult eGFR equations misused	Bedside Schwartz eGFR [25,26]
Imaging	Antenatal and postnatal ultrasound common	Findings not linked to a follow-up plan	CAKUT flag at discharge
Specialist access	Paediatric nephrologists concentrated in metro tertiary centres	Long travel, out-of-pocket cost	Tele-nephrology; eSanjeevani teleconsultation
Digital records	Mostly paper outside large hospitals	No longitudinal record across facilities	ABHA ID and Ayushman Bharat Digital Mission [27]

The practical upshot: Indian clinicians already have the cheap tests needed (BP, dipstick, creatinine, ultrasound). What is missing is a rule for who should get them, when, and who acts on an abnormal result.

4. What Clinicians Want From a CKD Risk Tool: Lessons for India

The only published study of clinician views on CDS for CKD risk after preterm birth comes from the United States [12]. Sanderson et al. interviewed 25 neonatologists, general paediatricians and paediatric nephrologists (December 2023–April 2024). Clinicians wanted tools that fit workflow, sit inside the electronic health record, give clear actionable recommendations and include caregiver education. Their main worries were false reassurance, over-referral to nephrology, and burden on families with poor subspecialty access. All 25 endorsed the need for a paediatric CKD risk stratification tool. General principles of CDS design point the same way: tools fail when they add clicks, fire too often or give advice clinicians cannot act on [28].

Each of these findings changes shape in the Indian setting.

Table 2. US clinician priorities for a CKD risk CDS tool and their Indian translation.

Priority or concern (US study [12])	Indian context	Design implication for India
EHR integration	Most SNCUs and private clinics lack a full EHR	Paper-first design: a one-page checklist and an MCP Card sticker, with an optional mobile/web version linked to ABHA
Efficient workflow	Very high outpatient volumes and short consultations	≤ 6 inputs available at discharge; output is a single colour tier
Actionable recommendations	Variable access to tests by district	Each tier names tests that a district hospital can do: BP, dipstick, creatinine, ultrasound
Caregiver education	Diverse languages and literacy levels	Pictorial leaflets in regional languages; counselling by nurses and ASHAs
False reassurance	“Low risk” may be read as “no risk”	Even the lowest tier carries a lifelong message: BP check at every visit, avoid NSAIDs, report swelling
Over-referral to nephrology	Very few paediatric nephrologists, in metro centres only	Most children managed by paediatricians; referral only for defined red flags; tele-nephrology first
Family burden	Travel, lost wages, out-of-pocket cost	Align kidney checks with existing immunisation and high-risk follow-up visits

Table 2. US clinician priorities for a CKD risk CDS tool and their Indian translation.

Priority or concern (US study [12])	Indian context	Design implication for India
EHR integration	Most SNCUs and private clinics lack a full EHR	Paper-first design: a one-page checklist and an MCP Card sticker, with an optional mobile/web version linked to ABHA
Efficient workflow	Very high outpatient volumes and short consultations	≤ 6 inputs available at discharge; output is a single colour tier
Actionable recommendations	Variable access to tests by district	Each tier names tests that a district hospital can do: BP, dipstick, creatinine, ultrasound
Caregiver education	Diverse languages and literacy levels	Pictorial leaflets in regional languages; counselling by nurses and ASHAs
False reassurance	“Low risk” may be read as “no risk”	Even the lowest tier carries a lifelong message: BP check at every visit, avoid NSAIDs, report swelling
Over-referral to nephrology	Very few paediatric nephrologists, in metro centres only	Most children managed by paediatricians; referral only for defined red flags; tele-nephrology first
Family burden	Travel, lost wages, out-of-pocket cost	Align kidney checks with existing immunisation and high-risk follow-up visits

Two concerns are specific to India and were not prominent in the US data. First, sex and social bias in follow-up: families may be less likely to return for girls, and follow-up falls off when families migrate for work. Second, test quality: creatinine assays and reporting vary across laboratories, so a tool must state which eGFR equation to use and when to repeat an abnormal value.

5. A Proposed Indian Framework for CKD Risk Stratification

We propose a three-tier framework that uses six items already known at NICU or SNCU discharge and only tests available at a district hospital (Figure 1). It is a starting point for consensus and validation, not a validated prediction model. It draws on the modified Delphi consensus on kidney health monitoring of NICU graduates [29], KDIGO CKD guidance [30], and the paediatric blood pressure guideline [24].

The clinician checks high-risk criteria first; the first tier whose criteria are met sets the follow-up plan. The red-flag box applies to every tier.

Design principles

• Inputs captured once, at discharge. Six items fit on a discharge summary and the MCP Card. Missing data default the child to the higher tier.
• Colour output, not a score. Red, amber and green are familiar from Indian growth charts and triage, and survive photocopying and handwritten transfer.
• Cheap, repeatable tests. BP with an appropriately sized cuff, urine dipstick, and serum creatinine with the bedside Schwartz equation (eGFR = 0.413 × height in cm ÷ serum creatinine in mg/dL) [25]. Where an enzymatic creatinine is not available, abnormal results should be repeated before labelling.
• Piggy-back on existing visits. Kidney checks are timed to immunisation, high-risk follow-up and RBSK contacts, so families make no extra trips.
• Paediatrician-led, nephrologist-supported. Most children never need a nephrologist. Abnormal results go first to tele-nephrology review, keeping scarce in-person slots for children who need them.
• Family-centred messaging. Every tier, including green, receives a short lifelong message: kidney check at every visit, no over-the-counter painkillers such as ibuprofen, healthy weight, and BP checks in adolescence and pregnancy.

Formal prediction models for CKD progression already exist for children with established CKD [31], but none predicts CKD onset from neonatal data. The framework above should therefore be treated as a hypothesis to be tested in Indian cohorts.

6. Implementing a Kidney Risk Tool in the Indian Health System

A tool succeeds only if it is used at discharge and acted on at follow-up. We suggest delivery through three routes that already reach these children.

• Facility level. Add the six inputs and the tier to the standard SNCU and NICU discharge summary, and to SNCU online reporting. Private NICUs can add them to existing software templates.
• Family level. A colour sticker or stamp on the MCP Card, with a pictorial leaflet in the family’s language. The card travels with the child when families migrate.
• Digital level. A simple web or mobile calculator that links the tier to the child’s ABHA ID under the Ayushman Bharat Digital Mission [27], so the risk flag follows the child across public and private providers. Tele-nephrology through eSanjeevani or institutional platforms can review abnormal results.

Professional bodies — the Indian Society of Pediatric Nephrology, National Neonatology Forum and Indian Academy of Pediatrics — are natural conveners for a joint consensus statement and training modules.

Table 3. Unintended consequences to design against.

Risk	Why it matters in India	Mitigation
False reassurance	Green tier read as “kidneys are fine”	Lifelong message on every tier; BP checks continue
Over-referral	Very few paediatric nephrologists	Paediatrician-managed tiers; defined red flags; tele-review first
Misread infant eGFR	GFR is physiologically low until about age 2	Use eGFR thresholds only after age 2; earlier, track trend and creatinine against age norms
Laboratory variation	Jaffe creatinine over-reads at low values	Repeat abnormal values, preferably with enzymatic assay, before labelling CKD
Family anxiety and cost	Out-of-pocket spending, lost wages	Tests timed to existing visits; free tests under public programmes
Inequity in follow-up	Lower return for girls, migrant and rural families	Track follow-up by sex and residence; ASHA reminders
Alert fatigue	Many preterm children qualify	Only three tiers; most children in green need no extra tests

Table 3. Unintended consequences to design against.

Risk	Why it matters in India	Mitigation
False reassurance	Green tier read as “kidneys are fine”	Lifelong message on every tier; BP checks continue
Over-referral	Very few paediatric nephrologists	Paediatrician-managed tiers; defined red flags; tele-review first
Misread infant eGFR	GFR is physiologically low until about age 2	Use eGFR thresholds only after age 2; earlier, track trend and creatinine against age norms
Laboratory variation	Jaffe creatinine over-reads at low values	Repeat abnormal values, preferably with enzymatic assay, before labelling CKD
Family anxiety and cost	Out-of-pocket spending, lost wages	Tests timed to existing visits; free tests under public programmes
Inequity in follow-up	Lower return for girls, migrant and rural families	Track follow-up by sex and residence; ASHA reminders
Alert fatigue	Many preterm children qualify	Only three tiers; most children in green need no extra tests

7. Research Agenda for India

The framework needs Indian evidence at every step. We propose six linked studies.

• A multi-stakeholder qualitative study. Semi-structured interviews with neonatologists, general paediatricians (public and private), paediatric nephrologists, SNCU nurses, ASHAs and parents of preterm children, sampled purposively across regions and levels of care, in the participants’ own languages. Analysis by reflexive thematic analysis [32] and reporting to COREQ [33]. This would be the Indian counterpart of Sanderson et al. [12] and would add the family and frontline-worker voice that the US study did not include.
• A national Delphi consensus. Convened by ISPN, NNF and IAP to agree risk criteria, test schedule and referral thresholds.
• A prospective multicentre cohort. NICU and SNCU graduates followed to 2 and 5 years with BP, urine albumin-to-creatinine ratio, creatinine and cystatin C eGFR, and kidney length, to test how well the tiers discriminate and calibrate.
• Indian reference data. Normative BP, kidney size and eGFR equations for Indian children, including those born preterm.
• An implementation trial. A stepped-wedge rollout across districts, measuring follow-up completion, early detection, family experience and cost.
• Prevention in the NICU. Nephrotoxin stewardship and neonatal AKI surveillance programmes in Indian NICUs, adapted from Baby NINJA [18].

8. Conclusions

India’s success in saving preterm and LBW newborns creates a large, growing population at roughly double the lifetime risk of CKD. The information needed to identify children at highest risk is already available at discharge, and the tests to monitor them cost little. What is missing is a simple, shared rule linking risk to action. International clinician views and Indian health-system realities point to the same design: a tiered, paper-first, digitally linkable, family-centred tool led by paediatricians and supported by nephrologists. Building and validating such a tool with Indian clinicians and families is a practical step towards preventing adult kidney failure that begins at birth.