first results and next steps

8/12/2019 First Results and Next Steps

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IBD Registry. All rights reserved ibdregistry.org.uk

First results and next steps

Dr Fraser Cummings


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IBD Registry Outcomes

Number of IBD patients

Time to diagnosis

No. of hospital admissions Reasons for admission

Length of in-patient stay

Number of operations

Types of operation

Smoking Medication

Cancer


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Preliminary data

Female Male Total

Trust 1 487 466 953

Trust 2 645 621 1266

Trust 3 895 1022 1917

Trust 4 56 48 104

2083 2157 4240

Data taken from

The Princess Alexandra

Hospital NHS Trust (RQW)

Bart's Health NHS Trust (R1H)

Luton and Dunstable University

Hospital NHS Foundation

Trust (RC9)

University College London

Hospitals Trust (RRV)


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CD (K50) UC (K51) IBDU (K52)

Trust 1 255 231 16

Trust 2 724 480 31

Trust 3 870 782 0

Trust 4 46 55 4

n=3441

Paediatric n=31


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Smoking

9.68%

24.68%

41.77%

23.87%

% of Smoking status

Current

Ex

Never

Not Known


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Medication

Drug Trust 1 Trust 2 Trust 3 Overall

CD

n=448

UC

n=361

CD

n=568

UC

n=233

CD

n=47

UC

n=54

CD

n=1063

UC

n=648

Biologics 6.9% 1.9% 39% 22.7% 36% 29.6% 25.4% 11.7%

Immunomodulator 27.2% 18.6% 67.2% 74.2% 0% 0% 47.4% 37%

IMM + biologic 3.3% 0.9% 5.1% 4.2% 0% 0% 4.1% 2%

5ASA 47.1% 63.4% 2.2% 24.5% 59.5% 66.7% 23.7% 49.7%


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HES Inpatient - admissions

4,324 inpatient admissions to these 4 organisations 4,839 finished consultant episodes (FCEs) for these 4

organisations

1,816 of the 4,237 Registry patients (43%) wereadmitted to these 4 organisations in 2012-13 (4,342

inpatient admissions)

28 of these patients had 10 or more admissions in

2012-13

919 of 4,342 admissions were via emergency

channels (21%)


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HES - Outpatient 16,741 Outpatient attendances

3,542 patients Most common specialties: Gastroenterology and Gen Med

0 1000 2000 3000 4000 5000 6000

GASTROENTEROLOGY

GENERAL MEDICINE

PAEDIATRICS

GENERAL SURGERY

RHEUMATOLOGY

Other

Outpatient Attendances


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Inpatient - diagnostic coding

1,627 of 4,342 (37%) have primarydiagnosis of K50 Crohnsdisease

653 of 4,342 (15%) have primary

diagnosis of K51 Ulcerative colitis

2,240 of 4,342 admissions (51%) haveanydiagnosis of K50 Crohnsdisease

(without K51)

994 of 4,342 admissions (23%) have

anydiagnosis of K51 Ulcerative colitis

(without K50)

27 have a diagnosis of bothK50 andK51 (1%)

1,081 of 4,342 (25%) admissions have

nodiagnosis of K50 or K51 recorded

51%

23%

1%

25%

Diagnostic Coding of IBD

(any position)

Crohn Disease

Ulcerative colitis

Both

Neither


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Inpatient - procedure or

intervention

0 200 400 600 800 1000 1200 1400 1600

Cytokine inhibitor drugs Band 1

Diagnostic fibreoptic endoscopic examination of colon and biopsy of lesion ofcolon

Diagnostic endoscopic examination of lower bowel and biopsy of lesion of lower

bowel using fibreoptic sigmoidoscope

Continuous intravenous infusion of therapeutic substance NEC

Fibreoptic endoscopic examination of upper gastrointestinal tract and biopsy of

lesion of upper gastrointestinal tract

Other

None

X921

H221

H251

X292

G

451

-

FCEs

Count of Finished Consultant Episodes

by main procedure or intervention


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Inpatient - length of stay

0

50

100

150

200

250

300

350

1 2 3 4 5 6 7 8 9 10 >10

Count of discharges with non-zero length of stay

In 2012-13 there were 4,399 discharges for our cohort

3,203 (73 per cent) had a zero duration length of stay


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Next Steps

Establish data entry methods Data entry portal

Pre-existing systems (Ascribe, Rotherham etc)

Increase participation 25+ sites submitting data

35,000+ patients BSG 2015

Case studies to support business cases Local reporting systems (Improve Care Now)

Paediatric participation


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Next steps- Research

Proposals

Academic

Pharma Industry

UKIBDGC

HES linkage


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first results and next steps

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