National Oesophago-gastric Cancer Audit

National Oesophago-Gastric Cancer Audit

Prospective Audit Dataset

Registered charity. No 212808

Version No: Final

Issue Date: September 2007

Purpose of this document

The purpose of this document is to define the dataset for the prospective audit.

version history

Version / Date created / Version description / Author /
2.0 / 16/07/07 / Revision following comments from CRG / Cromwell / Palser
2.1 / 23/07/07 / Adjustment to oncology dataset: data to be held on two records rather than one. / Cromwell / Palser
2.2 / 30/07/07 / Addition of full SNOMED code definitions. Correction of typos in field options / Cromwell/Palser
2.3 / 02/08/07 / Mandatory fields for Pathology record added. No changes to data item definitions / Cromwell/Palser
2.4 / 03/08/07 / Format of SNOMED codes and fields with codes of two-digit length / Cromwell/Palser
2.5 / 03/09/07 / Comments from User Acceptance Testing incorporated / Cromwell/Palser
2.6 / 11/10/07 / Update from Pilot – radiological endoscopic procedures / Cromwell

For further information, contact

Dr David Cromwell for National Oesophago-Gastric Cancer Audit project team,

Clinical Effectiveness Unit, The Royal College of Surgeons of England,

35-43 Lincoln's Inn Fields, London WC2A 3PE

1. Introduction

This document contains the technical specification of the proposed dataset for the prospective audit phase of the National Oesophago-Gastric Cancer Audit. It is a complementary document to the accompanying general description that presents the dataset in the format of data collection forms and that describes the envisaged data collection process.

The proposed dataset contains items necessary to examine the audit questions specified in the Audit tender document issued by the Healthcare Commission, namely,

1.  What are timescales of the process of care?

2.  What are characteristics of patients and their cancers, relevant to treatment selection and outcome?

3.  What proportions of patients are offered radical or palliative treatment and what are the determinants of treatment?

4.  Is there an association between social deprivation and timely access to diagnosis and therapeutic care?

5.  What are the short-term outcomes of treatment?

6.  What are the survival rates and levels of health status among patients at 1 year after diagnosis and what factors explain the variation among patients?

The items in the prospective dataset relate primarily to questions 1 to 5. The date of death for the analysis of survival will be obtained from the Office for National Statistics. Health status will be measured using EORTC quality of life instruments in a complementary component of the audit.

2. Design and size of the dataset

Patients with oesophago-gastric cancer present with at various stages of disease progression. The extent of disease progression dictates the range of treatment options available and, for the group as a whole, a wide variety of therapies may be performed. As the audit questions do not focus on either particular patient groups (curative or palliative) or types of treatment, it has been necessary to capture data across the whole patient pathway.

The dataset for the prospective audit consists for four components:

·  Part 1 (patient details, tumour and planned treatment) concerns newly diagnosed patients and contains data items related to their diagnosis, stage and treatment intent

·  Part 2 (surgery) concerns patients who undergo either curative or palliative surgery and contains data items on the surgical treatment and pathology results (resections only)

·  Part 3 (oncology) concerns patients who undergo oncological treatment and contains data items on neoadjuvant, adjuvant, definitive and palliative treatments.

·  Part 4 (endoscopic therapy) concerns patients who undergo endoscopic therapeutic procedures

Patients will only have one treatment record for surgery and endoscopic therapeutic procedures. Patients will generally only have one oncology record. However, two oncology records will be created if the patient undergoes both neoadjuvant and adjuvant therapy (oncology before and after surgery). Not all items will be relevant to each patient.

11 October 2007 2

National Oesophago-gastric Cancer Audit

3. Dataset definitions

Mandatory items that are required for a patient or treatment record to be created are shown with a bold field ID and field name

The final column, value resp, indicates whether the field can take single (S) or multi (M) values.

Field ID / Man. / Data item / Field name / Description / Purpose / Format / Options / Source of definition / NCDS Code / Value
Resp. /
D1 / Y / Person family name / Surname / That part of a person's name which is used to describe family, clan, tribal group, or marital association. / Used to link records where the new NHS number is not available. / Text / NHS Data Dictionary / 1.5 / N/A
D2 / Y / Person given name / Forename (s) / The forename or given name of a person. / Used to link records where the new NHS number is not available. / Text / NHS Data Dictionary / 1.6 / N/A
D3 / Y / NHS number / NHS Number* / A number used to identify a PATIENT uniquely within the NHS in England and Wales. / Used for unique identification to match records from different service providers / 10 digit number / NHS Data Dictionary / 1.1 / N/A
D4 / Y / Postcode at usual address (at diagnosis) / Postcode at diagnosis / A person’s postcode at diagnosis. ONS rules for completion of this field will need to be followed / The address at diagnosis is used to enable analysis by locality / region of patients and analyse outcomes by social deprivation quintile / 8-character alphanumeric / NCDS / 1.8 / N/A
D5 / Y / Person gender current / Sex / A person’s gender at time of diagnosis / To enable analysis by gender / 0=Not known
1=Male
2=Female
9=Not specified / NHS Data Dictionary / 1.9 / S
D6 / Y / Person birth date / Date of Birth / The date on which a person was born or is officially deemed to have been born. / To enable analysis by age at diagnosis / Date.
e-GIF format ‘CCYY-MM-DD’ / NHS Data Dictionary / 1.10 / N/A
T1 / N / Source of referral for cancer / Source of referral / The source from where the initial referral originates. / To identify patterns of referral. / 01=Following an emergency admission (includes all acute admissions via A & E, Medical Admissions Unit, etc.)
03=Referral from General Medical Practitioner (for out-patient or other non-emergency referrals)
05=Referral from a consultant, other than in an A&E department (will include referrals from Screening Services)
99=Not known (default) / NCDS / 2.1 / S
T2 / N / Cancer referral priority type / Priority of referral / This field identifies those records that fall within the boundaries of the two-week wait standards. This data item is to refer to the initial referral into the first secondary care unit on the patient pathway. / For analysis of waiting times (and % of cases referred as urgent) / 01=Urgent referral for suspected cancer from a General Medical Practitioner
02=Other referral source or urgency / NCDS / 2.4 / S
T3 / N / Cancer referral decision date / Date of Referral to OG Team for Investigation / The date on which the initial referral for investigation was made:
·  Date on the letter/fax/proforma/e-mail from referring GP or other hospital department
·  Date of telephone call from referring GP or other hospital department
·  Date of cross-referral, where patient is already in hospital
·  Date of admission to hospital, in the case of patients coming in as emergencies / To establish the date on which the referring clinician first initiates referral to the specialist involved in the diagnostic process.
To identify length of delay in the handling of referrals and to monitor waiting times / Date.
e-GIF format ‘CCYY-MM-DD’ / NCDS / 2.5 / N/A
T4 / Y / Diagnosis date (cancer) / Diagnosis Date / This field records the date of diagnosis of the tumour. It is required with the date of birth to derive the age at diagnosis. The definition provided conforms with the international requirements specified by the European Network of Cancer Registries (ENCR). / To calculate annual incidence rates and to determine the start date for survival analysis. / Date
e-GIF format ‘CCYY-MM-DD’ / NCDS / 4.1 / N/A
T5 / N / Organisation code (code of originator) / Hospital Name / The organisation code of the Unit where the diagnosis was made / To enable analysis by Originator Code. / 5-character alphanumeric
for hospital NACS code / NCDS / 1.3 / N/A
T6 / Y / Pretreatment Site / Pretreatment Site / The main cancer site for which the patient is receiving care. / *To establish the numbers of various cancers and enable calculation of annual incidence rates.
To allow for an assessment of subsequent treatment and outcome rates. / 01=Oesophagus upper third
02=Oesophagus middle third
03=Oesophagus lower third
04=Siewert 1
05=Siewert 2
06=Siewert 3
07=Fundus
08=Body
09=Antrum
10=Pylorus / New Definition / S
T7 / Y / Histology (SNOMED) / PreTreatment Histology / The cell type of the malignant disease. / To determine the incidence of tumours of different histology and behaviour for epidemiological analyses. / Adenocarcinoma
(M8140/3, M8142/3, M8144/3, M8145/3, M8211/3, M8260/3, M8480/3, M8481/3, M8490/3, M8576/3)
Squamous cell carcinoma (M8070/3, M8071/3, M8072/3, M8074/3, M8083/3)
Adenosquamous carcinoma (M8560/3)
Small-cell carcinoma
(M8041/3, M8042/3)
Undifferentiated carcinoma (M8020/3, M8021/3)
Other epithelial carcinoma
(M8010/3, M8011/3, M8012/3, M8014/3, M8032/3, M8033/3, M8200/3, M8430/3, M8512/3, M8980/3, M9100/3)
Malignant neoplasm (histology not done) (M8000/3) / NCDS / SNOMED / 4.5 / S
T8 / N / Staging procedures / Staging procedures / Investigations performed to establish cancer stage. / To monitor the standard of staging for establishing suitability for surgery and the presence of metastases / 2 = CT-Scan
4 = PET / PET-CT
5E= Endoscopic ultrasound (EUS)
L = Laparoscopy
F = EUS Fine needle aspiration
99 = Other / NCDS / extended / 3.3 / M
T9 / N / T category (final pre-treatment) / Pretreatment_T / The ‘T’ part of the TNM classification used to describe the clinical stage of the tumour prior to treatment / To allow for pre-treatment T stage to be taken into account in the analysis of treatment and outcome. / T0
T1
T2
T3
T4
Tx / NCDS; UICC Coding / 6.1 / S
T10 / N / N category (final pre-treatment) / Pretreatment_N / The ‘N’ part of the TNM classification used to describe the clinical stage of the tumour prior to treatment. / To allow for pre-treatment N stage to be taken into account in the analysis of treatment and outcome. / N0
N1
N2
N3
Nx / NCDS; UICC Coding / 6.3 / S
T11 / N / M category (final pre-treatment) / Pretreatment_M / The ‘M’ part of the TNM classification used to describe the clinical stage of the tumour prior to treatment / To allow for pre-treatment M stage to be taken into account in the analysis of treatment and outcome. / M0
M1
M1a
M1b
Mx / NCDS; UICC Coding / 6.5 / S
T12 / N / Performance Status (adults) / Performance Status / The patient’s performance status, to be the value presented at the MDT meeting prior to the beginning of treatment. / Risk adjustment / 0=Able to carry out all normal activity without restriction
1=Restricted in physically strenuous activity but able to walk & do light work
2=Able to walk and capable of all self care but unable to carry out any work. Up and about >50% of waking hours
3=Capable of only limited self care, confined to bed or chair >50% of waking hours
4=Completely disabled. Cannot carry on any self care. Totally confined to bed or chair
5=Not recorded / NCDS; WHO Handbook / 5.10 / S
T13 / N / Comorbidity / Comorbidity / The nature of any pre-existing conditions / co-morbidity which may have effect on subsequent treatment. / Risk adjustment and to understand the determinants of care / 1=Cardiovascular disease
2=COPD / asthma
3=Chronic renal impairment
4=Liver failure or cirrhosis
5=Diabetes
6=Mental illness
7=Cere/Periph. Vascular
8=Barrett’s oesophagus
9=Significant other / New Definition / M
T14 / N / Care plan agreed date / Care Plan Agreed Date / The date that the cancer care plan was agreed and the decision to treat was made. / To record the history of cancer care plans for this patient’s treatment. / e-GIF format ‘CCYY-MM-DD’ / NCDS / 5.3 / N/A
T15 / Y / Cancer care plan intent / Care Plan Intent / The intention of the treatment being planned.
Curative – treatment given with the potential for cure (radical treatment). Palliative – anti-cancer treatment given with the aim of symptom control. Palliative – supportive care / To enable analysis of treatment planned versus treatment given.
To monitor the number of cancer patients who received no specific anti-cancer treatment. / C=Curative
P=Palliative: Anti-cancer treatment
S=Palliative: Supportive care
9=Not known / NCDS
trimmed / 5.5 / S
T16 / N / Planned cancer treatment type / Treatment modality / The treatment(s) that are planned for the patient / To determine patterns of primary treatment.
To enable analysis of discrete groups of patients particularly where several modalities are used. / 01=Surgery only
02=Radiotherapy only
10=Chemotherapy and surgery (any combination)