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UK IBD Audit 3rd Round – Paediatric Crohn’s Disease Help Notes

Help Notes for Paediatric Crohn’s Disease (Inpatients)

Patient Identification. Patients should be included if they have a primary discharge diagnosis of Crohn’s Disease that matches the ICD-Codes provided

We know that there are often problems with miscoding so it will ultimately be the responsibility of the clinical lead at each site, or other designated IBD team members under their guidance, to decide whether the admission was primarily for Crohn’s Disease and if the case note details should therefore be audited.

Only include admissions of >24 hours. Do not enter data for day cases such as for endoscopy or drug infusions.

We know that many sites choose to complete the details of each admission on the paper proforma prior to transferring the details onto the website. A general rule when completing the form is that where you see boxes as options for answers then you can choose multiple options for answers (i.e. all that apply). Circle options indicate that a single option must be chosen. Where you see a combination of boxes with a circle choosing the answer option next to a circle will mean that none of the answer options with a box next to them can therefore be chosen.

Question Number Data Item Audit Help Notes

Pre-section Patient DemographicsA Auditor Discipline:

a) Consultantb) Other medical staffc) Nursed) Managere) Clinical Auditf) Other, please specify

Please enter the discipline of each individual who made a significant contribution to the data collection and entry.

B Patient Audit Number: This is automatically generated when you start to enter a new case onto the UK IBD Audit data entry web tool. Please keep a record of the number so that you have a trail back to the appropriate patient should you need to refer back to the case notes

C What was the patient’s age at admission?

Enter the age of the patient at the date of the admission to hospital.

D Gender:Male / Female

Indicate male or female

UK IBD Audit, 3rd Round Adult Crohn’s Disease Proforma Help Notes, Updated 10.05.11

Copyright Royal College of Physicians, London1


Section 1: Admission / Mortality1.1 Admission

1.1.1 What was the date of admission to this hospital?

Please enter the date of admission to your hospital in the format:day (DD), month (MM) year (YYYY) DD/MM/YYYY

Only enter details of one admission per patient even if they were admitted more than once during the audit period, that being the admission closest to 1st September 2010.

Source: This will be found on electronic patient management systems and within medical and nursing notes1.1.2 What was the primary reason

for admission?

a) Emergency admission for active CD

b) Planned admission for active CD

c) Elective admission for surgeryd) New diagnosis of Crohn’s

Diseasee) Transferred from another site

for surgeryf) Transferred from another site

for further medical management

a) Emergency admission for active CD: means acute admission from GP/A&E/other hospital b) Planned admission for active CD: patient seen as outpatient or by GP and admission arranged by hospital.c) Elective admission for surgery: surgery planned prior to the admissiond) New diagnosis of Crohn’s Diseasee) Transferred from another site for surgeryf) Transferred from another site for further medical management

*If IBD was not the primary reason for admission please discard the patient’s notes, and move on to the next applicable patient.

If the primary reason for admission is option c) Elective admission for surgery, or e) transferred from another site for surgery, then a number of subsequent questions in the dataset do not need to be answered. By section these are:

Section 1, questions 1.1.3 through to 1.1.7iSection 2, the entire section can be ignoredSection 3, ignore all questions in section 3 apart from 3.1.1

1.1.3 Which specialty was responsible for the patient's care 24 hours after admission?a) Acute medicineb) Paediatric gastroenterologyc) Paediatric surgeryd) General paediatrics within a

paediatric GI networke) Adult gastroenterologyf) Colorectal surgeryg) General paediatricsh) Other, please specify

This can be difficult to clearly assess but we want to determine whose care the patient was under from the period 24 hours after the initial admission to hospital.

Source: Which specialty the patient is under can be obtained from case note entries by specialist teams (consultant, SpR, F1, F2 or other grade), from nursing notes or hospital transfer notes; it can also be inferred from transfer to a specialist ward.




1.1.4 What date was the patient first seen by a Consultant Paediatric Gastroenterologist?

_ _ / _ _ / _ _ _ _Not seenNot required

Enter the date when the patient was first seen by a Consultant Paediatric Gastroenterologist during the admission.‘Seen by’ includes direct hand-written entries by consultants, typed letters or where noted by another member of the team e.g. ‘patient reviewed by Dr…’

If the patient was not seen by a Consultant Paediatric Gastroenterologist during the admission enter ‘not seen’.

You have an additional option to indicate that review by a consultant paediatric gastroenterologist was not required, for instance if admitted under the direct care of a Consultant Paediatric Surgeon. To be able to tick ‘Not Required’ on the audit website you will need to select ‘Not Seen’ first, however we would like to confirm that if this is done the answer will be considered as ‘Not Required’ during data analysis.

Source: From medical, nursing or therapy records

1.1.5 What date was the patient first seen by a Consultant Paediatric Surgeon?

_ _ / _ _ / _ _ _ _Not seenNot required

Enter the date when the patient was first seen by a Consultant Paediatric Surgeon during the admission.‘Seen by’ includes direct hand-written entries by consultants, typed letters or where noted by another member of the team e.g. ‘patient reviewed by Mr / Miss…’

If the patient was not seen by a Consultant Paediatric Surgeon during the admission select ‘not seen’.

You have an additional option to indicate that review by a Consultant Paediatric Surgeon was not required, for instance if admitted under the direct care of a Consultant Paediatric Gastroenterologist. To be able to tick ‘Not Required’ on the audit website you will first need to tick ‘Not Seen’, however we would like to confirm that if this is done the answer will be considered as ‘Not Required’ during data analysis

1.1.6 Was the patient seen by a Paediatric IBD Nurse Specialist during the admission?Yes No

This refers to being seen by a Paediatric IBD Specialist Nurse at any time during the admission. This does not include being seen by a stoma nurse only.

Source: entry in the continuing care case notes, direct entry in nursing notes or entry in notes commenting that patient seen by IBD Nurse/GI Nurse

1.1.7 Was the patient transferred to a specialist paediatric gastroenterology ward?

YesNo

Answer ‘yes’ to this question if the patient was transferred to a specialist paediatric gastroenterology ward at any time during their admission

A specialist paediatric gastroenterology ward is defined for this audit as one where paediatric gastroenterology patients (including liver disease) are routinely allocated and that have specialist medical, nursing and allied health professional staff. It can be a medical, surgical or joint specialist ward

Source: From medical, surgical, nursing or therapy records or hospital patient administration records




1.1.7i If yes to Q 1.1.7, which type of ward?

a) Medical b) Joint Medical / Surgicalc) Surgical

If you answered Yes to Q1.1.7 you should indicate which type of specialist paediatric gastroenterology ward the patient was transferred to from the following options:

a) Medical: A ward in the hospital which predominantly deals with medical paediatric gastroenterologyb) Joint Medical / Surgical: A joint medical and surgical paediatric gastroenterology ward c) Surgical: A ward in the hospital which predominantly deals with surgical paediatric gastroenterology

Source: From medical, surgical, nursing or therapy records or hospital patient administration records

1.2 Comorbidity

1.2.1 Did the patient have any significant comorbid diseases? (select all that apply)

a) Respiratoryb) Strokec) Liver Diseased) Nonee) Other, please specify

There only needs to be a mention of these in clerking notes or previous letters, rather than extensive supporting information, to include as comorbidity. You can choose more than one option.

If you choose ‘other’ please be sure to give further details. Only include ‘other’ if it is a significant comorbidity such as non-cured cancer (except BCC).

Source: Clerking notes / Patient Letters

1.3 Discharge / Mortality

1.3.1 Did the patient die during admission?

YesNo

Indicate whether the patient died during the admission

If no, you must still answer Q1.3.1iii below

1.3.1i If yes, Date of death?

_ _ / _ _ / _ _ _ _

Please enter the date of death in the format:day (DD), month (MM) year (YYYY) = DD/MM/YYYY




1.3.1ii If yes, please write the primary cause of death in the space below (appears as Q1.3.1iii on the web tool)

If a post mortem was performed state the primary cause of death indicated on the post mortem report.

If there was no post mortem state the primary cause of death entered on the death certificate counter foil in the notes.

If neither of the above are available then you can use the last primary diagnosis stated in case notes recorded prior to, or after death.

Source: patient case notes, death certificate, post mortem report1.3.1iii If no to 1.3.1, Date of Discharge

_ _ / _ _ / _ _ _ _

If you answered No to Q 1.3.1 then you must enter the date of discharge from your hospital in the format:day (DD), month (MM) year (YYYY) DD/MM/YYYY

Source: This will be found on PAS medical or nursing notes1.3.1iv Was the patient:

a) Discharged homeb) Transferred to another site for

surgeryc) Transferred to another site for

further medical management

Please indicate the destination that the patient was discharged to

Source: patient case notes, PAS system1.4 Medication on Admission

1.4.1 What treatment was the patient taking for Crohn’s Disease on admission? (select all that apply)

a) 5-ASAb) Azathioprinec) Mercaptopurined) Methotrexatee) Antibioticsf) Corticosteriodsg) Dietary Therapy – exclusive

enteral liquid therapyh) Dietary Therapy –

supplemental enteral liquid therapy

i) Anti-TNF-αj) Nonek) Other (e.g. trial medicine)

Include only oral drugs and drugs which are used directly for the treatment of Crohn’s Disease:

a) 5-ASA drugs: includes drugs such as Salazopyrine, Balsalazide, Pentasa, Asacol, Olsalazine, Salofalk. Only record oral 5-ASAb) Azathioprinec) Mercaptopurined) Methotrexatee) Antibiotics: Only include those used to treat Crohn’s Disease e.g. Ciprofloxacin or Metronidazolef) Corticosteroids: Prednisolone or Budesonide. Only record oral steroidsg) Dietary therapy-exclusive enteral liquid therapy: h) Dietary therapy–supplemental enteral liquid therapy: h) Anti–TNF: Infliximab or Adalimumab. Include if currently on Adalimumab. Include if having regular Infliximab infusions (8 weekly or less) or if had Infliximab within the previous 8 weeks. Include if on Thalidomide for treatment of Crohn’s Diseasej) Other: (eg trial medication) Do not include treatment not specifically for Crohn’s; disease, e.g. treatment for osteoporosis, vitamin B12, folic acid. Please indicate details of the ‘Other’ treatment in the space provided.

Source: From medical, nursing or therapy records




1.4.2 In the 12 months prior to this admission was the patient taking Steroids (at any time) for >3 months?

When looking to answer ‘Yes’ or ‘No’ include any dose of corticosteroids (Prednisolone or Budesonide) taken continuously for more than 3 months for Crohn’s Disease (and not any other indication) during the 12 months prior to the date of this admission

Source: Medical or nursing notes; Clinic letters1.4.2i If yes, was an appropriate dose

reduction planned? Yes / No

Please answer Yes or No

Source: Medical or nursing notes; Clinic letters1.4.2ii If yes, was bone protection

used?Yes / No

Bone protection agents such as calcium, calcium with vitamin D, Bisphosphonates (alendronate, risendronate, disodium etindronate)

Source: Medical or nursing notes, Clinic letters1.4.2iii Was a DEXA scan done?

YesNo

Bone densitometry may be measured by DEXA scan or heel ultrasound.

Source: Medical or nursing notes, clinic letters or radiology or nuclear medicine results section1.4.2iv Was a course of exclusive

enteral nutrition administered in the past 12 months?Yes / No

1.5 Smoking Status (only to be completed for children aged 12 and over)1.5.1 What was the smoking status

of the patient?a) Current smokerb) Lifelong non-smoker / ex

smokerc) Not documented

Current smoker - if the patient is either a) currently smoking or b) has given up within the last 3 monthsLifelong non-smoker/ex-smoker - if stopped smoking >3 months ago or never smokedNot documented - if no documentation of smoking status on this admission

Source: Medical or nursing notes1.6 Patient History

1.6.1 Did the patient have a pre-admission diagnosis of Crohn’s Disease?

YesNo

If the primary reason for admission was indicated as c) Elective admission for surgery in Q 1.1.2 then you do not need to answer this question. If patient had previous diagnosis of Crohn’s Disease based on endoscopic, histological or radiological evidence and/or began any active treatment for CD (at any time) then class as a pre-admission diagnosis of Crohn’s Disease.

If the patient had been referred by GP (or others) with a possible diagnosis of CD but diagnosis had not been made then class as ‘no pre-admission diagnosis of CD’

Source: Medical, nursing or therapy records. An established diagnosis of Crohn’s Disease will most often be recorded in the initial clerking. However you may need to search previous clinic letters




1.6.2 What was the extent of the disease? (select all that apply)

a) Terminal ileum (L1)b) Colonic (L2)c) Ileo-colonic (L3)d) Perianale) Oralf) Upper GI (L4)g) Not known

a) Terminal ileum (L1)b) Colonic (L2) – Evidence of colonic disease by endoscopy or radiology with no evidence of small bowel disease.c) Ileo-colonic (L3) – Both small bowel and colonic diseased) Perianal Disease – No evidence of small bowel or colonic disease but with Crohn’s fissures / fistulas / perianal abscessese) Oral f) Upper GI (L4)g) Not known – Only tick this if there is no clearly identifiable extent of disease.

Do not include: Gastro-duodenal Crohn’s or Oral Crohn’s patients

Source: From medical, nursing or therapy records or IBD database1.6.3 Has the patient had previous

admissions to your hospital with Crohn’s Disease in the two years prior to this admission?YesNo

Answer ‘Yes’ or ‘No’

Source: From medical, nursing or therapy records or hospital patient administration records.1.6.3i If yes, how many times in the 2

years prior to this admission?Count all admissions with the primary diagnosis as Crohn’s Disease in the 2 years prior to the audited admission. This includes both surgical and medical admissions. Do not include day case/overnight admissions for drug infusions / transfusions / endoscopy. Do not include admission to other hospitals.

Source: From medical, nursing or therapy records or hospital patient administration records.Section 2: Assessing the Severity of Crohn’s Disease (with reference to your answer to Q1.1.2, if the patient was either admitted electively for surgery, or transferred from another site for surgery ignore all of section 2)

2.1 Initial assessment during first full day following admission2.1.1 Number of liquid stools per

day:_ _Not documentedNot required

Record the number of liquid / semi-formed stools indicated in the handwritten case notes or clinic letter to GP. Include all bowel movements regardless of whether only blood or mucus or faecal. Sometimes it can be difficult to find a precise measure. If it is documented as ‘8-10X a day’, answer with the highest number recorded.

Source: Medical or nursing notes and typed letters2.1.2 General well being:

WellMild symptoms Moderate symptomsSevere symptomsNot documented

This data item is subjective and can be difficult to decide. There is no pre-defined definition of severity. The scoring system relates to the modified Harvey Bradshaw index to patient’s description of general well being. If general well-being is recorded then define as follows: “Well” = well; “Below par” = mild symptoms; “Poor” = moderate symptoms; “terrible” = severe symptoms.

If general well-being is not recorded and/or you can’t make value judgement from the clinical details from that clinic visit, enter “Not Documented”.




Source: Medical or nursing notes and typed letters.2.1.3 Abdominal Pain:

NonePresentNot documented

If there is no documented abdominal pain put “Not documented” rather than “None”. If the severity is not specifically recorded, but abdominal pain is mentioned, you will have to make a judgment on severity. If you can not make a judgement on the available data in the case notes, put “Not documented”.

Source: Medical or nursing notes and typed letters.2.1.4 Abdominal Mass

NonePresentNot documented

Dubious = thickened small bowel or colonic loops but not recorded as definite mass.

Source: Medical or nursing notes and typed letters.

2.1.5 Did the patient report any of the following complications?

Mouth ulcersArthralagiaPyoderma Gangrenosum Anal fissureFistulaErythema Nodusm AbscessIritisOther, please Specify

All listed options require one of the following responses:

Yes / No / Not documented

Source: Medical or nursing notes and typed letters2.1.6 What were the admission

results for the following tests?

Record results of blood tests either done at this clinic visit or in the 4 weeks before or after this clinic visit. If multiple blood tests done in this time then document those done nearest to this clinic visit

The initial results for CRP on admission must be between 0 and 8002.16i CRP mg/L_ _ _Not documented

2.16ii HB g/dL_ _ _Not documented

The initial result for Hb on admission must be between 2.0 and 20.0

The initial result for Albumin on admission must be between 5 and 50

Source: Laboratory results section of case notes most likely source. Other sources may be hand written case notes, clinic letters. If none found then check computerised laboratory results service in your organisation (if one exists)

2.16iii Albumin g/L_ _Not documented




2.2 Exclusion of Infection (in patients with diarrhoea as a presenting symptom)2.2.1 Was a stool sample sent for

Standard Stool Culture?

Yes / No /NA

Record as ‘Yes’ if a stool sample was sent for standard stool culture if the patient had diarrhoea (i.e. was producing loose or semi-formed stools) Do not include for any subsequent episodes of diarrhoea following admission

Source: Best source will be microbiology report which should have the date sample received. Also review PAS/computer records and medical, nursing or therapy records

2.2.1i Date sent?

_ _ / _ _ / _ _ _ _

Record the date that stool culture was sent. If the patient had a stool sample sent within 7 days prior to admission this can included in this section.


2.2.1ii Was it positive?

Yes / No

Answer ‘Yes’ or ‘No’

Source: Best source will be microbiology report, PAS / computer records or medical, nursing or therapy records2.2.1iii Date of positive sample DD / MM / YYYY

2.2.2 Was a stool sample sent for CDT?

Yes / No / NA

If the patient had diarrhoea (i.e. was producing loose or semi-formed stools) then record if and when the stool sample was sent. Do not include for any subsequent episodes of diarrhoea following admission.Record the date that the stool sample was sent. If the patient had a stool sample sent within 7 days prior to admission this can included in this section.


2.2.2i Date sent DD / MM / YYYY

2.2.2ii Was it positive?

Yes / No Source: Microbiology report / PAS / computer records / medical, nursing or therapy records2.2.2iii Date of positive sample DD / MM / YYYY

Source: Microbiology report / PAS / computer records / medical, nursing or therapy records

2.3 Weight assessment and dietetic support during admission2.3.1i Was the patient’s weight

measured during admission?Yes / No

Record if the patient’s weight was recorded at any time during admission. Weight may be recorded in the medical notes, nursing notes, observation chart or in separate dietetic notes. Body Mass Index is weight (Kg) divided by height2 (meters).




a) Was BMI measured?Yes / No

Source: Dietetic/Medical/Nursing/Therapy notes. If you are not sure where the dietician enters information in the case report contact your dietetic department. In some hospitals the dietetic records are kept separately from the rest of the notes

2.3.1ii Was the patient’s height measured during admission?Yes / No Source: Dietetic/Medical/Nursing/Therapy notes

2.3.2 Did a dietician see the patient?Yes / No

Did a dietician visit the patient at any time during admission?

Source: Dietetic/Medical/Nursing/Therapy notes2.3.3 Was dietary treatment

initiated?Yes / No

Any dietary advice or dietary supplements given to the patient. This includes general advice on a diet high in calories, advice on dietary supplements, specific Crohn’s specific dietary therapy to treat active disease or TPN.

Source: Dietetic/Medical/Nursing/Therapy notes2.3.3i Was exclusive liquid

enteral nutrition therapy prescribed?Yes / No

Discuss with Dietetics Department if unsure

Source: Dietetic/Medical/Nursing/Therapy notes2.3.3ii Was supplemental liquid

enteral nutrition therapy prescribed?Yes / No

Discuss with Dietetics Department if unsure

Source: Dietetic/Medical/Nursing/Therapy notes2.3.4 Was parenteral nutrition

given?Yes / No

Includes central or peripheral parenteral nutrition given at any point during admission including after surgery.

Source: Dietetic/Medical/Nursing/Therapy notesSection 3: Medical Interventions (with reference to your answer to Q1.1.2, if the patient was admitted electively for surgery or transferred from another site for surgery ignore sections 3.2 and 3.3 (other than Q3.3.2) and 3.43.1 Use of anti-thrombotic therapy3.1.1 Did the patient have a

thrombotic episode during this admission?

Yes / No Source: medical, nursing or therapy records3.1.2 Was the patient given

prophylactic Heparin?

Yes / No

Any dose of Heparin and can either be fractionated or unfractionated Heparin.

Source: Drug chart, medical, nursing or therapy records




3.2 Steroid Therapy3.2.1

3.2.1i

Were corticosteroids administered during this admission?

Yes / No

If yes, which were initially prescribeda) IV corticosteroidsb) Oral corticosteroids

i. Indicate “yes” if IV steroids were used at any time except if given after surgery. Any intravenous corticosteroid preparation that was used to treat Crohns should be included.

ii. Oral steroids: any orally administered corticosteroid that was used to treat Crohns should be included

iii. No……Indicate here if either a) no steroids were used or b) no IV or oral steroids were used i.e. steroid enemas or suppositories.

Source: Drug charts, medical, nursing or therapy records, hospital patient administration records3.2.2 Which of the following

steroids were prescribed?

a) Prednisoloneb) Budesonidec) Hydrocortisoned) Methylprednisolonei. Initial dose?

(Mg/day)ii. What date was the

therapy initiated? iii. Was therapy

increased during this admission? Yes / No

iv. What date was therapy increased?

Only include either oral corticosteroids (Prednisolone or Budesonide) or IV steroids (Hydrocortisone or Methylprednisolone). Do not include rectal or topical steroids.

i, ii, iii, ivIt can occasionally be difficult to define the dose at initiation or increase. For example, if the 1st doctor prescribed 20mg prednisolone this would be the initial dose and later that day a 2nd doctor increased it to 40mg then this would be the increased dose. You may need to use your judgment to decide a significant increase in therapy and the dose. In general, this will be the maximum daily dose in first 72 hours after admission. Record the highest dose prescribed in the first 48 hours of any steroid (oral or IV) prescription.

If the patient was admitted on steroids and the dose was increased, record the increased dose

Source: Drug charts, medical, nursing or therapy records, hospital patient administration records

3.3 Which other therapies did the patient receive?3.3.1 Anti-TNF therapy

Yes / No

i) Start Dateii) Did the patient respond? Yes / No

i. Record date anti-TNF therapy started (Infliximab or Adalimumab) initiated if applicable to this admission. ii. Select this if the patient required no further therapies during this admission.

Source: Medical or nursing notes3.3.2 Clinical Trial

Yes / No

i) Please specify:

i. Please record the name of the clinical trialii. Record the date the clinical trial started with this patientiii. ‘No’ Select this if the patient required no further therapies during this admission




ii) Start dateiii) Did the patient respond? Yes / No Source: Medical or nursing notes

3.3.3 Significant Other therapies?Yes / No

i) Please specifyii) Start Dateiii) Did the patient respond? Yes / No

Please include only significant other medical therapies. If the patient underwent surgery at this point, select ‘no’ and all relevant surgical data will be captured in section 4

i) Please provide the name of the other therapy provided

Section 4: Surgical Interventions (If you indicated b) transferred to another site for surgery in your answer to Q1.3.1v, ignore all of section 4. Q4.1.1 will automatically default to ‘No’ on the web tool if that is the case4.1 Surgical Therapy4.1.1 Did the patient have surgery

on this admission?

Yes / No

“Yes” includes any operation including minor Perianal surgery. Answer “No” if only examination under anaesthetic (EUA) was performed without any intervention. Do not include endoscopic procedures.

Source: Medical Notes / Nursing Notes.4.1.2 What date was the decision

made to operate made?

_ _ / _ _ / _ _ _ _ Not known

Record the date that the initial decision was taken to undertake surgery for Crohn's Disease. This may occasionally difficult to determine. The date that the decision was made to operate may be prior to the admission date ie in the outpatient department. Note the date the decision was definitely made to operate rather than “planning”.If notes state something like ‘if CRP>??, and diarrhoea unchanged in 2 days then will need surgery’ then indicate date as 2 days from that entry.

Source: Medical case notes4.1.3 What was the date of the

surgery?

_ _ / _ _ / _ _ _ _

Record date first operation was performed Use format: day (DD), month (MM) year (YYYY) DD/MM/YYYY

Source: Medical Notes / Nursing Notes.4.1.4 Was there a delay of more

than 24 hours between decision to operate and surgery for non-elective patients? Yes / No

Compare the dates of 4.1.2 and 4.1.3 to determine if there was a ‘delay’ between the decision being made and the actual date of the operation. If there was a delay of 24 hours or more then please indicate what the reason for this delay was.




4.1.4i If yes, what was the reason for the delay?

a) Improvement in severity of Crohn’s

b) Cancelled due to lack of theatre time

c) Cancelled for other clinical reasons (e.g. correction of hypokalaemia)

d) Patient declined surgery or needed time to consider

e) Other please specify Source: Medical case notes, operation notes 4.1.5 Was the patient seen by a

stoma nurse during this admission?Yes / No

i. If yes, what date was the patient first seen by a stoma nurse?

Entries from stoma nurse may be in the medical, nursing notes or separate stoma care nursing notes. If you have difficulty finding this information, contact your stoma nurse (if you have one) and ask.

i. Enter date first seen by stoma nurse during this admission. Do not include if the patient was seen in the outpatient department but not during this admission DD / MM / YYYY

Source: Medical notes/Nursing notes4.1.6 What was the grade of the

senior surgeon present?

a) Consultant Paediatric Surgeon

b) Consultant Colorectal Surgeon

c) Consultant GI Surgeon (non-colorectal)

d) Consultant General Surgeone) Other Consultant Surgeonf) Specialist Registrarg) Other, please specify

The operation notes should include details of all those present at the operation. Please indicate who was the most senior member of staff that was present at the operation, they may not have necessarily performed or led on the operation. Consultant Paediatric Surgeon: a surgeon who has Consultant Colorectal surgeon: a surgeon who has a specialist interest in colorectal surgery and is a member of ACPGBIConsultant GI surgeon (non-colorectal): a GI surgeon with a non-colorectal specialty interest e.g. upper GI or hepato-biliary-pancreatic surgeryConsultant General Surgeon: a surgeon with general rather than specialist interestOther Surgical Consultant: a surgeon with a specialist interest which is non-GI e.g. vascular surgeon, breast surgeon, gynaecologist, transplant surgeonSpecialist registrar: includes research registrarOther: state which grade e.g. F2, staff grade, associate specialist

Source: Medical notes, operation note, nursing or anaesthetic notes. If you are unsure about which grade of surgeon performed the surgery contact your surgical colleagues who may be able to help you.




4.1.7 What were the indications for surgery? (Select all that apply)

a) Failure of Medical Therapyb) Toxic megacolonc) Bleedingd) Obstructione) Completion protectomyf) High Grade Dysplasiag) Low Grade Dysplasiah) Ungraded Dysplasiai) Cancerj) Perforation k) Abscessl) Formation of ileostomym) Closure of stoman) Other indication, please

specify

Record the primary indication(s) for surgery prior to operation. In some cases there may be multiple indications, for example perforation and abscess drainage.

Failure of medical therapy: Failure of any type of medical therapy and surgery performed because of continued symptoms. Do not grade as failure of medical therapy if any more specific indication is present Toxic megacolon: transverse colon >5.5cm on X-ray (plain abdominal X-ray or CT scan)Bleeding: if primary indication was to stop uncontrolled or continued bleedingObstruction: If preoperative symptoms or radiology suggested significant obstructionCompletion proctectomy: Record as completion proctectomy if this was the primary reason cited for the operation. High Grade, Low Grade, Ungraded Dysplasia: Record as dysplasia/cancer if planned surgery where there was known to be colonic dysplasia or cancer. Do not include if found after surgeryCancer: Record if dysplasia or cancer from pre-operative histologyPerforation: Record as perforation if known to have a perforation pre-operativelyAbscess: Include intra-abdominal abscess, perineal abscess, ischio-rectal abscessFormation of ileostomy: Record as formation of ileostomy if this was the primary reason cited for the operation Closure of stoma: Record as closure of stoma if this was the primary reason cited for the operationOther: try to keep to the above indications wherever possible. If there is an exceptional indication please state what this is

Source: The primary indication for surgery will usually be recorded on the operation note. If it is not recorded there you may have to infer the indication from preceding entries in medical notes or the results of investigation (eg radiology showing abscess or perforation)




4.1.8

4.1.8i

Type of intervention (select all that apply)

a) Segmental / extended colectomy

b) Subtotal colectomyc) Protocolectomyd) Stricturoplastye) Ileal / Jejunal Resectionf) Resection of intra-

abdominal fistulag) Proctectomyh) Completion proctectomyi) Ileocolonic resection j) Drainage of abscessk) Formation of ileostomy or

colostomyl) Revision of stomam) Perineal proceduren) Closure of stoma o) Division of adhesionsp) Other intervention, please

specify

Was the surgery done laparoscopically / laparoscopically-assisted?Yes / No

Try to keep to the listed broad interventions wherever possible.

If there was a major intervention (eg colectomy) together with a minor intervention, only record the major intervention.

p) other - If there is an exceptional indication not included in this list please state what this is.

Indicate ‘yes’ if surgery was completed laparoscopically or laparoscopically-assisted. This will be indicated in the operation notes. If the operation was started laparoscopically but required to be converted to an open operation answer ‘No’

Source: If you are unsure about which type of operation was performed contact your surgical colleagues4.1.9 Was the ASA status recorded

pre-operatively?Yes / No

If yes, what was the ASA Status?1 / 2 / 3 / 4 / 5 / N/A

ASA is the American Society of Anaesthesiologists grade that is widely used as a predictor of operative mortality. This information should be recorded in the anaesthetic records that are usually in a separate part of the case notes. It may be entered in the medical hand written case notes prior to surgery.

The ASA status can be difficult to find. If you are not familiar with surgical or anaesthetic notes please contact your anaesthetics department who should be able to tell you where this information is documented.

Source: Anaesthetic notes. Operation or medical notes




4.2 Surgical Complications4.2.1 Did the patient suffer from any

of these complications following their surgery? (select all that apply)

a) Wound Infectionb) Rectal stump complicationsc) Intra-abdominal bleedingd) Intra-abdominal sepsise) Anastomotic leakagef) Stoma complicationsg) Deep vein thrombosis (DVT)h) Pulmonary embolus (PE)i) Ileus requiring TPNj) Cardiack) Respiratoryl) Clostridium difficile-

associated diarrhea (CDAD)m) Other, please specifyn) No complications

Wound Infection - This is defined as one or more of the following: evidence of purulent discharge from wound, wound infection requiring additional antibiotic therapy, and/or requires further surgeryRectal stump complications - For example continued bleeding per rectum which requires additional medical therapy or further surgery during the admission or dehiscence of rectal stumpIntra-abdominal bleeding - Confirmed by imaging and/or requiring angiogram or further surgery.Intra-abdominal sepsis - Confirmed by imaging (ultrasound, CT or MRI scan) and/or requiring either surgical or radiological drainageAnastomotic leakage - Evidence of leakage of luminal contents in surgical drain, collection of fluid around anastomosis either by radiology or further surgery during the admissionStoma complications - These will include ischaemia, retraction or separation of stoma, peristomal fistula or high output stoma (defined as requiring additional IV fluids more than one week after surgery). Only include this as a high output stoma if this is the primary reason for continuing IV fluidsDeep Vein Thrombosis (DVT) - Confirmed by ultrasound, CT or other imaging modalityPulmonary Embolus (PE) - Confirmed by V/Q scan or CT pulmonary angiography or pulmonary angiographyIleus requiring TPN - Record if prolonged ileus after surgery such that PN was initiated to provide nutrition or PN was continued which had been started prior to surgeryCardiac - Myocardial infarction (raised troponin T, or troponin I), congestive cardiac failure (clinical or radiological evidence)Respiratory - Defined as symptomatic chest infection/pneumonia requiring additional antibiotic therapyClostridium difficile-associated diarrhoea (CDAD) - Select if the patient presented with CDiff related diarrhoea following surgery when there was no indication of the infection prior to surgery

4.3 Post-Operative Prophylactic Therapy4.3.1 Was the patient prescribed

any of the following drugs on discharge? (please select all that apply)

a) Azathioprineb) Mercaptopurinec) Metronidazoled) 5-ASAe) Methotrexatef) Infliximbabg) Other, please specifyh) None

Record any of these drugs that were started or continued after surgery.

d) 5-ASA drugs include: Salazopyrine, Balsalazide, Pentasa, Asacol, Olsalazine, Salofalk

Source: Discharge summary / medical or nursing notes / drug chart




Section 5: Discharge Arrangements (If the patient died during the admission or you indicated either b) transferred to another site for surgery or c) transferred to another site for further medical management in your answer to Q1.3.1v ignore all of section 55.1 Discharge Arrangements5.1.1 Was the patient taking oral

steroids on discharge?Yes / No / N/A

Record whether the patient was taking oral steroids when discharged.

Source: Discharge summary, drugs on discharge note to GP, medical or nursing notes, patient administration system5.1.1i Was a steroid reduction

programme started on discharge?Yes / No / N/A

The reduction programme should be documented either in the discharge summary or in a copy of the letter sent to the patient’s GP.

Source: Discharge summary, drugs on discharge note to GP, medical or nursing notes, patient administration system5.1.1ii Were bone protection

agents prescribed?Yes / No / N/A

Bone protection agents such as calcium, calcium with vitamin D, Bisphosphonates (Alendronate, Risendronate, Disodium Etindronate)

Source: Discharge summary; Discharge letter to the GP; Medical or nursing notes5.1.2

5.1.2i

Was patient on an immunosuppressive on discharge? Yes / No / N/A

If yes, which one?a) Cyclosporinb) Methotrexatec) 6MPd) Azathioprinee) Other, please specify

Source: Discharge summary, drugs on discharge note to GP, medical / nursing notes, patient administration system, drug chart

5.1.3 Was there a plan for maintenance Anti TNF on discharge? Yes / No / N/A

The maintenance programme should be documented either in the discharge summary or in a copy of the letter sent to the patient’s GP.

Source: Discharge summary, drugs on discharge note to GP, medical or nursing notes, patient administration systemSection 6: Outpatient Visits6.1 Patient History

6.1.1 Did the patient have previous outpatient visits for Crohn’s Disease at this hospital in the 12 months? Yes / No*

This only includes previous outpatient visits in your Trust / Health Board. Do not include outpatient visits to other organisations for management of Crohn’s.

* If no, you do not need to answer any further questions in this section

Source: From medical, nursing or therapy records or hospital patient admin records.




6.1.2 How many times was the patient reviewed for their Crohn’s Disease in an outpatient’s clinic in the 12 months prior to the start date of this admission?_ _

Include all recorded OPD visits (for the management of Crohn’s Disease) over 12 months. Do not include day cases (eg endoscopy, blood transfusions and drug infusions) or OPD visits for other reasons. Do not include outpatient visits to other hospital trusts for Crohn’s Disease.

The number of visits must be between 1 and 20

Source: The most appropriate data source will be PAS. Alternatively, hand-written case notes and typed letters.6.1.3 Approximately how many

times was the patient seen by the following staff in the 12 months prior to the start date of this admission? i. Paediatric Consultantii. Paediatric IBD Nurse Specialistiii. Paediatric SpRiv. F2 (SHO)

The patient may have been seen by more than one health care professional in a single visit and it is important to record all of these contacts, please count each staff member individually

You will need to check typed letters/handwritten notes for mention of ‘seen by…’ or ‘discussed with…’

Source: Medical / nursing / clinic notes6.1.4 What was the date of the last

visit at the Outpatient Department prior to admission?

This is the last documented OPD visit for Crohn’s Disease prior to admission. If the last visit was the one which initiated the inpatient admission being audited in sections 1 to 5 please ignore it and use the previous one.

Source: Medical / nursing / clinic notes6.1.5 Was the patient’s height

recorded during the outpatient visit?Yes / No Source: Medical / Nursing / Therapy notes / patient growth chart

6.1.6 If the patient was 10 years or older at the time of the last outpatient visit have they had their pubertal status recorded in the past 12 months?Yes / No / NA Source: Medical / Nursing / Therapy notes /



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