Northern Ireland Cancer Network

Lung Cancer Dataset

Title: N. Ireland Lung Cancer Dataset

Version: Final 1.0

Date: 24/02/07

Author: NIcan Regional Lung Group
Northern Ireland Cancer Network

Lung Cancer Dataset version: draft 1.0- based on NCDS V4.0 & Lucada Dataset

/ Data Item / Data Indicator
M = MANDATORY
O = OPTIONAL / Description / Purpose / Codes and Classifications /
1 / Demographics / * required for Cancer Registration MDS
# required for analysis of waiting times
1.1 / Health & Care Number
[H&C number] / M / Patients unique 10 digit new format number equivalent to NHS number in England and Wales / *Used for unique identification to match records from different service providers
1.2 / LOCAL PATIENT IDENTIFIER
[Hospital Number] / M / There may be different hospital numbers collected for the patient at different points in the pathway / * Used for unique identification to link events within a single service provider / HPSS Data dictionary
1.2 / SITE CODE [ PROVIDER FIRST SEEN] / M / Unique 5 digit code of unit where patient first seen / *To enable analysis by Provider code / HPSS Data dictionary
1.4 / CARE SPELL IDENTIFIER / M / to link all activities for the patient to the same care spell. Allocated on diagnosis, at the organisation where the diagnosis takes place and communicated to all organisations providing care / * # Used to link all activities for the patient to the same care spell / HPSS Data dictionary
1.5 / PATIENT FAMILY OR SURNAME / M / * Used for unique identification to link records where the new H&C number is not available (e.g. to previous tumours, genetic requests, events carried out in private hospitals, / HPSS Data dictionary
1.6 / PATIENT FORNAME OR PERSONAL NAME / M / * Used for unique identification to link records where the new H&C number is not available (e.g. to previous tumours, genetic requests, events carried out in private hospitals / HPSS Data dictionary
1.7 / PATIENT USUAL ADDRESS (AT DIAGNOSIS) / M
1.8 / POSTCODE OF USUAL ADDRESS (AT DIAGNOSIS) / M / * To enable analysis by locality / HPSS Data dictionary
1.9 / SEX / M / * To enable analysis by sex / NHS Data dictionary
0-  Not known
1-  Male
2-  Female
3-  Not specified
1.10 / BIRTH DATE / M / * To calculate age at diagnosis for epidemiological and survival analysis / Date format
1.12 / CODE OF GP PRACTICE / M / Practice with whom patient is registered / * To enable analysis by GP practice code
2 / Referrals
2.1 / REFERRAL SOURCE FOR CANCER / M / From where the referral to respiratory medicine originates / To identify patterns of referral to Respiratory team / 01- GP ? Lung cancer
02- GP CXR
03-GP non-specific
04-A&E
05-DCU
06- Inpatient medicine
07-Inpatient surgery
08- Outpatient medicine
09-Radiology
10-Other
99-Not known
2.2 / REFERRAL FOR
OUT-PATIENTS / M / A classification which is used to identify the
source of referral of each CONSULTANT
OUT-PATIENT EPISODE. / # For Analysis of Waiting Times. The Waiting Times group needed a
different data item from 2.1 SOURCE OF
REFERRAL FOR CANCER, which has a
wider description – the definition here is
for referrals to out-patients only. / Not initiated by the CONSULTANT responsible for
the CONSULTANT OUT-PATIENT EPISODE
03 - referral from General Medical Practitioner
04 - referral from an A&E department
05 referral from a Consultant, other than in an
A&E department
06 - self-referral
07 - referral from Prosthetist
92 - General Dental Practitioner
93 - Community Dental Service
08 - other source of referral
/ Data Item / Data Indicator
M = MANDATORY
O = OPTIONAL / Description / Purpose / Codes and Classifications /
2.3 / CANCER REFERRAL PRIORITY / M / This field is submitted with item 2.2 Source of referral for outpatients in order to differentiate those records that fall within the 2 week wait standard.This data item refers to the initial referral into the 1st secondary care unit on pathway / # For analysis of waiting times. / 01 - Urgent referral for suspected cancer from a General Medical Practitioner or General Dental Practitioner
02 - Other referral source or urgency
2.4 / SITE CODE (PROVIDER FIRST seen) / Provider code of unit where the patient was first seen / # For analysis of waiting times.
2.5 / CANCER SPECIALIST REFERRAL
DECISION DATE / M / The date on which the referral was made: Date on the etter/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. Date of the first out-patient appointment, if
the referral was a self-referral
Date on the recall letter for patients recalled following a routine screening appointment / 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 / Date format
2.6 / REFERRAL
REQUEST
RECEIVED DATE
[Date of Receipt of
Referral] / M / The date that the referral request is received by the provider:
Date when letter/fax/electronic form is
Received. Date of verbal request / To establish the start date for the specialist-based diagnosis and
management process.
To identify length of delay in the handling
of referrals.
#For analysis of waiting times. / Date format
2.7 / CANCER SPECIALIST CONSULTANT CODE
[Referred to] / M / The person to whom the referral is made. If the referral is to a team, then this refers to the first consultant seen. / To monitor the proportion of cancer patients referred to a cancer site specialist
or a cancer site specific team.
2.8 / DATE FIRST SEEN BY CANCER SPECIALIST
[Date First Seen] / M / The date that the patient is seen by the person ‘referred to 2.6 above:
Date of first out-patient appointment .Date of first diagnostic procedure, if this
precedes the first out-patient appointment .Date first seen as an emergency, if the patient was first seen as an emergency. Date the patient was first seen following
recall by screening unit / To measure any delay between referral and
first assessment by the specialist team.
#For analysis of waiting times. / Date format
3 / Diagnosis
3.1 / DIAGNOSIS DATE
(CANCER)
[Date of diagnosis] / *To calculate annual incidence rates and to
determine the start date for survival
analysis. / Order of declining priority:
1. Date of first histological or cytological confirmation of this malignancy (with the exception
of histology or cytology at autopsy). This date should be, in the following order:
a. date when the specimen was taken, or
b. date of receipt by the pathologist, or
c. date of the pathology report
2. Date of admission to hospital because of this malignancy.
3. When evaluated at an out-patient clinic only: date of first consultation at the out-patient clinic because of this malignancy.
4. Date of diagnosis, other than 1, 2 or 3.
5. Date of death, if no information is available other
than the fact that the patient has died because of
malignancy.
6. Date of death, if the malignancy is discovered at
autopsy.
3.2 / PRIMARY
DIAGNOSIS (ICD)
[Primary Site] / Mappable to ICD-10
01-Primary lung cancer pathologically verified
02-Clinical lung cancer(not pathologically verified
03-Secondary lung cancer
3.3 / TUMOUR
LATERALITY
[Laterality] / M / * To differentiate tumours in paired
organs. / L- left
R - Right
M - Central
B - Bilateral
8 - Not applicable
9 – Not known
3.4 / HISTOLOGY
(SNOMED)
[Histology] / M / behaviour/histology of the tumour at the
point of diagnosis (there may be a number of
Pathology reports contributing to the
diagnosis). / Mappable to SNOMED
01-Non-small cell arcinoma
02-Adenocarcinoma
03-Squamous cell carcinoma
04-Large cell Carcinoma
05-Bronchiolalveolar
06-Adenosquamous
07-Small cell carcinoma
08-Atypical carcinoid
09-Typical carcinoid
10-Undifferentiated Carcinoma
11-Unspecified
12-Lymphoma
13-Mesothelioma
4 / Investigations
4.1 / CXR visible lesion? / O / 01-Yes
02-No
4.2 / Atelectasis left lung? / O / 01-None
02-Segmental
03-Lobar
04-Complete
4.3 / Atelectasis right lung? / O / 01-None
02-Segmental
03-Lobar
04-Complete
4.4 / Pneumonia? / O / 01-None
02-left
03-Right
04-Bilateral
4.5 / Effusion / O / 01-None
02-left
03-Right
04-Bilateral
4.6 / DATE BRONCHOSCOPY / O / Date format
4.7 / TUMOUR SITE
(determined bronchoscopically or radiologically) / O / 01-left upper lobe
02-left lower lobe
03-left main bronchus>2cm from carina
04-left main bronchus>2cm from carina
05-segmental
06-Tracheal
5 / Clinical assessment
5.1 / Localized wheeze / O / 01-No
02-Yes
5.2 / SVC Obstuction / O / 01-No
02-Yes
5.3 / Finger clubbing / O / 01-No
02-Yes
5.4 / SCF nodes / O / 01-No
02-Yes
5.5 / PERFORMANCE STATUS (ECOG) / M / WHO Handbook (Code 5 added)
0-Able to carry out all normal activity
1-Restricted in physically strenuous activity but able to walk and do light work
2-Able to walk and capable of selfcare but unable to carry out any work. Up and about more than 50% of waking hours
3-Capable of only limited self care, confined to bed or chair for more than 50% of waking hours
4-Completely disabled. Cannot carry on any self care. Totally confined to bed or chair
5-Not recorded
5.6 / DISTANCE ON FLAT / O / Numeric field
5.7 / STAIR CLIMBS / O / Numeric field
5.8 / HEIGHT / O / Numeric field
5.9 / WEIGHT / O / Numeric field
5.10 / BMI / O / Numeric field in 9.99 format
6 / Drugs
6.1 / ASPIRIN / O / 01-No
02-Yes
6.2 / PLAVIX / O / 01-No
02-Yes
6.3 / WARFARIN / O / 01-No
02-Yes
7 / Bloods
7.1 / Na / O / Numeric field
7.2 / ALK Phos / O
7.3 / LDH / O
7.4 / Calcium / O
7.5 / Creatinine / O
7.6 / Hb / O
7.7 / Platelets / O
8 / Pulmonary function
8.1 / FEV1 ABSOLUTE AMOUNT / M / Numeric field in 9.99 format
8.2 / FEV1 PERCENT PREDICTED / M / Numeric field %
8.3 / FVC ABSOLUTE / M / Numeric field in 9.99 format
8.4 / FVC PERCENT PREDICTED / M / Numeric field %
8.5 / FEV1/FVC / M / Numeric field %
8.6 / DCLO PERCENT PREDICTED / O / Numeric field %
9 / Co-morbitities
9.1 / COPD / M / To record degree of co-morbidity present / 01-None
02-Mild
03-Moderate
04-severe
9.2 / DIABETES / O / To record degree of co-morbidity present / 01-None
02-diet controlled
03-drug controlled
04-Insulin controlled
05-Uncontrolled
9.3 / ISCHAEMIC HEART DISEASE / O / To record degree of co-morbidity present / American Thoracic Co-morbidity scoring system
01-no known cardiac disease
04-previous MI>6mths OR angina < once per week
08-previous MI 3-6 mths ago OR regular exertional angina OR chronic compensated failure
16-previous MI 1-12 weeks ago, angina at rest
32-MI < 1week ago, chronic failure/ PND/ orthopnoea
9.4 / CEREBROVASCULAR DISEASE / O / To record degree of co-morbidity present / 01-No previous history
02-previous TIA's, assymptomatic bruit
04-previous CVA > 1 yr ago
08-previous CVA < 1yr ago";8
9.5 / PERIPHERAL VASCULAR DISEASE / O / To record degree of co-morbidity present / 01-No
02-Yes
9.6 / VALVULAR HEART DISEASE / O / To record degree of co-morbidity present / 01-No
02-Yes
9.7 / HYPERTENSION / O / To record degree of co-morbidity present / 01-No
02-Yes
9.8 / DEMENTIA / O / To record degree of co-morbidity present / 01-No
02-Yes
9.9 / RENAL IMPAIRMENT / O / To record degree of co-morbidity present / 01-No
02-Yes
9.10 / LIVER DISEASE / O / To record degree of co-morbidity present / 01-No
02-Yes
9.11 / OTHER MALIGNANCY / O / To record degree of co-morbidity present / 01-No
02-Yes
10 / Symptoms/Duration
10.1 / COUGH / O / 01-No
02-Yes. If yes specify duration
10.2 / CHEST INFECTION / O / 01-No
02-Yes. If yes specify duration
10.3 / HAEMOPTYSIS / O / 01-No
02-Yes. If yes specify duration
10.4 / HOARSENESS / O / 01-No
02-Yes. If yes specify duration
10.5 / WEIGHT LOSS / O / 01-No
02-Yes. If yes specify duration
10.6 / SHORTNESS OF BREATH / O / 01-No
02-Yes. If yes specify duration
10.7 / CHEST PAIN / O / 01-No
02-Yes. If yes specify duration
10.8 / BACK PAIN / O / 01-No
02-Yes. If yes specify duration
10.9 / FATIGUE / O / 01-No
02-Yes. If yes specify duration
10.10 / NEUROLOGICAL / O / 01-No
02-Yes. If yes specify duration
11 / Smoking history
11.1 / SMOKING STATUS / M / 01-Never
02-Current
03-Ex-smoker
11.2 / CIGARETTES PER DAY / O / Numeric field
11.3 / PACK YEARS / O / Numeric field in 9.99 format
11.4 / STOP DATE / O / Date format
12 / Imaging
12.1 / DATE CT SCAN REQUESTED / O / Date format
12.2 / DATE CT SCAN PERFORMED / O / Date format
12.3 / DATE CT SCAN REPORTED / O / Date format
12.4 / DATE CT SCAN TYPED / O / Date format
12.5 / DATE PET SCAN REQUESTED / O / Date format
12.6 / DATE PET SCAN PERFORMED / O / Date format
12.7 / DATE PET SCAN REPORTED / O / Date format
12.8 / DATE PET SCAN TYPED / O / Date format