Study number
For office use only. BPSU case number
END STAGE RENAL DISEASE IN EARLY INFANCY
Case Notification Form
Strictly confidential
The first 2 pages of the case notification form will be stored separately from the rest of the questionnaire and personal
identifying information for the case will be used only for linkage of records.
Thank you for completing our case notification form.
Please report any infant from age 4 weeks to 6 months with presumed End Stage Renal Failure (ESRF) even if you
think they may have been reported from elsewhere. A follow-up questionnaire will be sent in 12 months.
Case Definition
An infant will be considered to have a diagnosis of ESRD if the serum creatinine is equal to, or greater than 120
micromols/l.
Background
End stage renal disease (ESRD) remains the terminology most often used by Paediatricians in the UK to describe
irreversible Kidney failure. However, the international Nephrology community now describe irreversible Kidney failure
as Stage 5 Chronic Kidney Disease ( CKD 5 )
End stage renal failure ( Chronic Kidney Disease stage 5)
Defined by the National Kidney Foundation (US) Kidney Disease Quality Outcome initiative (KDOQI) Clinical Practice
guidelines as either
- a Glomerular Filtration rate (GFR) of less than 15 mL/min/1.73 m 2, which is accompanied in most cases by signs
and symptoms of uraemia, or
- a need for initiation of kidney replacement therapy (dialysis or transplantation) for treatment for complications of
decreased GFR, which would otherwise result in an increased risk of mortality and morbidity.
Rather than ask respondents to calculate an estimated GFR to decide if their case was reportable, the study uses a
serum creatinine of equal to, or greater then 120 micromols/l as the cut-off for inclusion. This will give an estimated
Glomerular filtration rate of less than 15 mL/min/1.73 m 2 for most infants in this population. This will also allow for
maximal ascertainment. We are aware that the case definition may result in the reprting of cases with reversible renal
impairment but these cases who recover native renal function will be identified through the 1 year follow-up
questionnaire.
Section 1- Clinicians details
Name
Job title
Address
Email address
Page 1 of 7
Study number
For office use only. BPSU case number
Consultant name
Job title
Delete as
appropriate
Email address
Nephrologist
/
Neonatologist
/
General Paediatrician
D
D
Date of Completion
M
M
Y
Y
Y
Y
Y
Y
Y
Y
Section 2- Child’s details
2.1
BPSU I.D
2.2
Hospital number
2.3
NHS number
2.4
DOB
D
222 2.42222 2.5
D
M
M
Birth gestation
( in completed weeks )
2.6
Sex
MALE
2.7
FEMALE
Birth weight ( Kg)
●
2.8
Home postcode at birth
First part only
2.9
County of birth
If born in Irish Republic
2.10
Ethnicity
Enter tick in relevant box
i.White?
British
Other white background
Please describe
ii.Mixed
race ?
White &
Black Caribbean
White &
Black African
White &
Asian
Other mixed background.
Please describe
iii.Asian or
Asian British?
Indian
Pakistani
Bangladeshi
Other Asian background
Please describe
iv. Black or
Black British?
Caribbean
African
Other black
background
Please describe
v.Chinese or
Other ethnic group
Chinese
Any other
Please describe
Study number
Section 3-
3.1
For office use only. BPSU case number
Mode of presentation
When was the diagnosis of ESRD made?
D
D
M
M
Y
Y
DefinitionPresumed irreversible renal failure with a serum
creatinine of greater than, or equal to 120
micromol/l
3.2
What was the Serum Creatinine at diagnosis?
( umol/l)
3.3
Weight at diagnosis ( kg)
●
3.4
3.5
Length at diagnosis (cm)
What was the primary renal diagnosis? Please tick the appropriate box(es)
Renal
dysplasia
Obstructive
uropathy
Congential nephropathies
Please describe
Please describe
Renal cystic
disease
Prune belly syndrome
Renal Vein thrombosis
Wilm’s tumour
Other
Please describe
Diagnosis
not yet known
3.6
Was the primary diagnosis made
ante-natally?
If Yes, please state the diagnosis
made
What was the gestational age at diagnosis?
in completed weeks
Was foetal intervention performed?
If yes, please describe
Y
N
Not
known
Y
N
Not
known
Y
Y
Study number
Section 4
4.1
For office use only. BPSU case number
Management following the diagnosis of ESRD
Y
Was the patient referred to a Paediatric Nephrologist?
N
If yes, please complete the following
Name of NephrologistHospital-
4.2
________________________
_____________________
Please tick all treatments used and major changes subsequent to the diagnosis of ESRD?
Please tick the appropriate box & enter the date of commencement.
If the same treatment was used more than once, please enter the information in column 2 of the appropriate section.
1
2
Conservative
management
(Pre-dialysis)
DD MM YYYY
DD MM YYYY
Peritoneal Dialysis
DD MM YYYY
DD MM YYYY
Haemodialysis
DD MM YYYY
DD MM YYYY
Palliative care
DD MM YYYY
DD MM YYYY
Recovered native renal
function
DD MM YYYY
DD MM YYYY
Renal transplantation
DD MM YYYY
DD MM YYYY
4.3
If the patient is deceased, please state the date and cause of death
Date of death
DD MM YYYY
Cause of death
Section 5-
Additional medical problems
Has the child ever had any of the following?
If so, please provide details.
Details
5.1
Urinary Tract Infection
Y
N
5.2
Hypertension
Y
N
5.3
Congenital Heart Disease
Y
N
5.4
Other Cardiovascular Disease
Y
N
5.5
Chronic Lung Disease
Y
N
5.6
Other Respiratory Disease
Y
N
5.7
Liver Disease
Y
N
5.8
Gastro-intestinal Disease
Y
N
5.9
Cerebral haemorrhage
Y
N
5.10
Seizures
Y
N
Don’t
know
Don’t
know
Don’t
know
Don’t
know
Don’t
know
Don’t
know
Don’t
know
Don’t
know
Don’t
know
Study number
For office use only. BPSU case number
5.11
Visual impairment
Y
N
Don’t
know
5.12
Hearing impairment
Y
N
Don’t
know
5.13
Hypoxic-ischaemic
Encephalopathy
Y
N
Don’t
know
5.14
Other Neurological disease
Y
N
5.15
Other, please give details
Y
N
Don’t
know
Don’t
know
5.16
Does the child have any
syndromic abnormalities?
5.17
Y
N
Don’t
know
Nutrition.
Please indicate which of the following feeding modalities have been used and state which is the current method of feeding.
Y
N
Naso-gastric/Naso-jejunal feeds
(NG/NJ)
i.
ii.
iii.
iv.
v.
Gastrostomy feeds
( GF)
Total Parenteral nutrition
(TPN)
Y
N
Y
N
How is the patient currently fed ?
Please tick box
Oral
NG/NJ
GF
Section 6- Surgical history
6.1
Please tick the appropriate box to describe the patient’s surgical history
6.1.1
Has the child had surgery?
Y
N
Not
known
If Yes, please answer Questions 6.1.2 to 6.1.4
6.1.2
Surgical procedures
Please detail the patient’s surgical history
Procedure
Yes?
No?
Not
Known?
Date(s) of
Procedure(s)
Access surgery
DD MM YYYY
Insertion of Peritoneal dialysis
( PD) catheter
Insertion of Central venous
catheter (CVC)
DD MM YYYY
Removal of PD catheter
DD MM YYYY
Removal of CVC
DD MM YYYY
TPN
Study number
For office use only. BPSU case number
Insertion of Gastrostomy
DD MM YYYY
Urology
DD MM YYYY
Insertion of Nephrostomy
Partial Nephrectomy
DD MM YYYY
Complete Nephrectomy
DD MM YYYY
Nephroureteretomy
DD MM YYYY
Fashioning of Cystostomy/
Vesicotomy
DD MM YYYY
Insertion of supra-pubic catheter
DD MM YYYY
Other Surgeryplease give details
DD MM YYYY
DD MM YYYY
DD MM YYYY
Thank you for completing this questionnaire
Karl McKeever
Consultant Paediatric Nephrologist
Royal Belfast Hospital for Sick Children
The Royal Hospitals
Belfast Health and Social Care Trust
Falls Rd
Belfast
BT12 6BE
Tel 02890630012
Secretary 02890632694
karl.mckeever@belfasttrust.hscni.net