NZSG 2018 Helen M Evans - Paediatric Gastroenterologist Service Clinical Director - New Zealand ...
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NZSG 2018
Helen M Evans
Paediatric Gastroenterologist
Service Clinical Director
Starship Child Health
Out-patient quality
improvement project
40% of patients did not need to be seen
Trainee clinics full with coeliac disease patients
Patients don’t like coming to hospital
The light bulb moment
“Why do you see all those coeliac disease
patients?”
Important facts about coeliac
disease
It’s common
There are evidence-based diagnostic protocols
It’s completely treatable
Treatment is lifelong dietary change
It’s common Up to 1% of NZ population affected Commonest referral indication to Paed Gastro
Coeliac disease at Starship
1999-2002
Number 48
Number per year 12
Average age 6.7 years
Range 1.5-15.7
Male: Female 19M; 29F
Ethnicity 92% European
4% Indian
1 European/Pacific
No Maori
At risk groups* 22%
* Type 1 diabetes, Down syndrome, affected first degree relative
Coeliac disease at Starship
1999-2002 2013-2014
Number 48 79
Number per year 12 51
Average age 6.7 years 7.9 years
Range 1.5-15.7 Range 1.5-15.1
Male: Female 19M; 29F 29M; 50F
Ethnicity 92% European 84% European
4% Indian 10% Indian
1 European/Pacific 6% Mixed
No Maori No Maori
No Pacific
At risk groups* 22% 9%
* Type 1 diabetes, Down syndrome, affected first degree relative
Coeliac disease at Starship
1999-2002 2013-2014 2017
Number 48 79 87
Number per year 12 51 87
Average age 6.7 years 7.9 years 7.1 years
Range 1.5-15.7 Range 1.5-15.1 Range 2.2-14.9
Male: Female 19M; 29F 29M; 50F 35M; 52F
Ethnicity 92% European 84% European 81% European
4% Indian 10% Indian 11% Indian
1 European/Pacific 6% Mixed 4% Maori
No Maori No Maori 4% Pacific
No Pacific
At risk groups* 22% 9% 12%
* Type 1 diabetes, Down syndrome, affected first degree relative
Coeliac disease at Starship
60
40
%N
20
0
Bishop. JPGN 2018
There are evidence-based
protocols
Husby et al. JPGN 2012;54(1):136-160Coeliac serology is probably now as
good as it will ever be
Serological tests Sensitivity (%) Specificity (%) PPV (%) NPV (%)
IgG AGA 57–78 71–87 20–90 40–90
IgA AGA 55–100 65–100 30–100 70–100
IgA EMA 86–100 98–100 98–100 80–95
IgA tTG 90–96 91–97 >90 >95
IgA tTG and EMA 98–100 98–100 >90 >95
IgA DGP 98 94 92 98
IgG DGP 97 100 100 97
IgA DGP + IgA tTG 100 93 91 100
IgG DGP + IgA tTG 100 97 97 100
IgG: immunoglobulin G; IgA: immunoglobulin A; AGA: antigliadin antibodies; EMA: endomysial antibodies; tTG: tissue
transglutaminase; DGP: deamidated gliadin peptide; PPV: positive predictive value; NPV: negative predictive value. Mourning for gluten
Packaged products
expensive
Worse if you can’t cook
The bread is rubbish
You can’t have beer
(when you’re older)
“If you haven’t got it,
you just don’t get it”Light bulb moment #2
“Why don’t you get Coeliac New Zealand to
manage the patients?”Coeliac New Zealand
How about we
pay you to look
Totes!
after our new
coeliac patients? Patient referred with positive blood tests
Directly admitted to endoscopy
Prioritised above all other indications except IBD &
emergencies
Standardised results letter sent to referrer and
family on day of histology meeting
Referred to Coeliac NZ & paid for by ADHB
Follow-up with GP Waiting time for clinic < 2 weeks
Waiting time for endoscopy < 4 weeks
Patient satisfaction survey 2017
94% satisfied with Starship experience
91% satisfied with Coeliac NZ experience
Some irritations with community dietetics & GPs
“Amazing; we’re so grateful; seamless; you
guys rock” Back to those protocols…
Should we adopt the ESPGHAN guidelines for
biopsy-free diagnosis? Biopsy not required if
Symptomatic
tTG > 10 times upper limit normal & positive EMA on 2 tests
Consistent HLA typing
Evidence-based guideline
Extensively referenced (though no Australasian studies)
Diagnosis must be made by a Paediatric Gastroenterologist
“Requires a period of implementation and testing …and to perform
prospective research studies”
Obvious benefits
Husby et al. JPGN 2012;54(1):136-160 ProCeDE Study. Gastroenterology 2017;153:924-935 Prospective research study April 2013-Nov 2014 104 cases (105 cases invited to participate) Positive serology at referral Symptom diary Repeat serology on day of endoscopy Single pathologist analysed biopsies
Marsh Grade 2 or above
Total cases
(%)
Total cohort 104 87 (84)
Symptomatic 94 77 (82)
Asymptomatic at
10 10 (100)
increased genetic riskMarsh grade 2 Percentage
Laboratory Total number
or above (95% CI)
Hospital 97 84 87 (78-92)
tTG positive
Community 98 85 87 (79-92)
Hospital 62 60 97 (89-99)
tTG >10x ULN
Community 67 65 97 (90-99)
Hospital 94 84 89 (82-94)
EMA positive
Community 92 83 90 (82-95)
ESPGHAN Hospital 56 54* 96 (88-99)
criteria Community 60 59✝ 98 (91-100)
*52 on initial biopsy, 2 on repeat ✝57 on initial biopsy, 2 on repeat ESPGHAN criteria perform well in Auckland children Possible 50-60% reduction in endoscopies for CD Minor variation between labs, likely related to different testing platforms Substituting DGP for EMA in the algorithm does not confer greater accuracy
Reassurance from histological diagnosis
Failure to accept diagnosis or adherence issues
without a histological diagnosis
Comparison with initial biopsy in patients who
require subsequent endoscopy for persistent
symptoms
Missed opportunity for co-morbid diagnosis to
be made – up to 10% may have EoE
Guandalini et al. JPGN 2013 Implementation Complexity of guidelines and grey areas PHARMAC Special Authority number for gluten-free foods required a biopsy Contract with Coeliac NZ required a biopsy What if the labs change their assays?
Labs – helpful Coeliac NZ – helpful PHARMAC – helpful GPs – helpful
Started in September 2018
16 cases so far; 15 females
2 had low serology on the 2nd test so had biopsies –
both positive for CD
1 is awaiting repeat serology
13 biopsy-free diagnoses
2 endoscopy lists saved in only 2 months Nationally
Inconsistent serology
Less easy access to Paed Gastro who have to
make the diagnosis & apply for the SA number
Between patients
Parent and child diagnoses
Asymptomatic & symptomatic sibling diagnoses Advocacy for standardised testing across the
country
Virtual consultations to make biopsy-free
diagnoses
Ditto for grey areas, queries, challenging cases
Analysis of biopsy-free diagnosis vs biopsy-
based diagnosis
Extension of Coeliac NZ contract to other
DHBsSummary
Coeliac disease is increasingly common in NZ children
Good protocols exist but they can be confusing
Biopsy-free diagnosis is achievable in a subset
Care is best provided in the community by peer-peer
support
While we no longer look after the patients, we are
always happy to adviseAcknowledgements Paul Birch Simon Chin Barnett Bond Carl Sunderland Kim Herbison Amy Andrews Jon Bishop Ben Hope Dana Alexander, Coeliac NZ Matt Tyson, PHARMAC Natalie Desmond, Contracting, WDHB
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