Blood Cancer (Lymphoma)

Transcription

1 Blood Cancer (Lymphoma) Data Definitions for the National Minimum Core Data Set Definitions developed by ISD Scotland in Collaboration with the Regional Cancer Networks Version 1: September 2004 The National Clinical Data Set Programme (NCDSP) is part of national ehealth Strategy and aims to standardise data items across NHSScotland, where it is feasible. Work is ongoing looking at items that are generic to all settings eg demographics. Proposed cancer core items included in this document will be accredited through an Information Standards Board comments on data items marked core are welcome and will be fed into this process for review.

2 CONTENTS Conventions Identification of Patients for Audit Database Specifications i ii ii Section 1 Patient Identifiers Page Patient Forename 1 Patient Surname 2 Patient Address 3 Patient Postcode 4 Date of Birth 5 Sex (Gender) 6 Institute/Hospital of Diagnosis (Referral) 7 Unit Number (Hospital Patient Identifier) 8 CHI Number 9 Consultant in Charge 10 GP Practice Code 11 Section 2 Hospital Clinicians and Referral Details Date of Referral 13 Date Referral Received 14 Mode of Referral 15 Urgency of Referral 16 Clinician Specialty of Clinician Date of First Seeing Clinician Section 3 Historical Data Prior Exposure to Chemotherapy or Radiotherapy 22 Previous or Concurrent Malignant Disease 23 Family History of Cancer 24 Previous Transplant 25 Date of First Transplant 26 HIV Related Lymphoma 27 Coeliac Disease 28 Section 4 Diagnosis and Management Date of Diagnosis 30 Date of Definitive Diagnosis 31 Incidence Date 32 Type of Specimen 33 Site of Specimen 34 Laboratory Report Number 37 Laboratory 38 Date Laboratory Report Approved 37 Most Valid Basis of Diagnosis 39 WHO Classification 41 Site of Origin of Tumour 43

3 Section 5 Diagnostic Data Haemoglobin 45 WBC Total 46 WBC Differential Neutrophils 47 WBC Differential Lymphocytes 48 Platelets 49 Bone Marrow Aspirate 50 Bone Marrow Trephine 51 LDH 52 Albumin 53 WHO/ECOG Performance Status 54 Date of First CT Scan 55 Cotswold Clinical Stage 56 Manchester Stage 57 B Symptoms 58 Bulk Disease 59 Origin of Disease 60 Number of Nodal Sites 63 Number of Extranodal Sites 65 SNLG Index for Hodgkin s Disease 67 Hansclever Index for Hodgkin s Disease 68 IPI (Lymphoma) 69 FLIPI Index (Lymphoma) 70 Morphology of Tumour 71 Section 6 Therapy Mode of First Treatment 73 First Chemotherapy (Lymphoma) 74 First Radiotherapy (Lymphoma) 75 Date of First Treatment 76 Reason for Delay in Starting Treatment 77 Section 7 Clinical Trials Trial Offered 79 Clinical Trial Name 80 Trial Entry Date 81 Section 8 MDT and Death Details Discussed by Multidisciplinary Team 83 Date of First Multidisciplinary Meeting 84 Seen by Clinical Nurse Specialist 85 Date First Seen by Clinical Nurse Specialist 86 Seen by Specialist Palliative Care 87 Date First Seen by Specialist Palliative Care 88 Date of Death 89 Primary Cause of Death 90 Appendix A Nodal and Extra-nodal Sites 91

4 CONVENTIONS In the following definitions the layout for each item is standard. Two conventions have been used in the document as follows: {curly brackets} - definition relates to one specific named data set 'described elsewhere' - indicates there is a definition for the named item within the document CRITERIA FOR INCLUSION OF PATIENTS IN AUDIT To facilitate national comparisons the same patients must be audited throughout Scotland. The following eligibility criteria have been documented for this purpose. Include all patients with a confirmed new primary lymphoma (based on the WHO classification) (See pages for codes). This includes patients who have had a previous primary malignancy of any site or a concurrent primary malignancy of another site. Departments should consider adding a flag to a record so that details of separate primary tumours can be linked for clinic purposes eg the multidisciplinary meeting. All patients with normal residence in Scotland even if they only received part of their therapy within a health board/region. Exclude patients where the origin of the primary is uncertain patients with recurrent disease (as opposed to a new primary) patients with normal residence outwith Scotland Page i

5 IDENTIFICATION OF PATIENTS FOR AUDIT It is recognised that not all patients present for treatment through the expected route and it may be difficult to identify the whole population for audit. It is suggested that some of the following should be used to identify patients: Pathology listings Notifications via the multidisciplinary team meetings Coding Scottish Morbidity Records (SMR) Departmental databases and registers Notifications from Clinical Nurse Specialists General Registrar Office (GRO) death data Provisional cancer registrations It should be noted that it is the responsibility of the hospital where the patient was diagnosed to identify patients and collect data for audit, even though the patient may receive treatment in more than one hospital, and submit the completed record for national quality assurance and comparative reporting. ASSISTANCE WITH DATA DEFINITIONS If you have problems with data definitions please queries to Jean Harvey ISD s Cancer Data Definitions Manager (jean.harvey@isd.csa.scot.nhs.uk ) who will keep a log of all queries, and will circulate nationally the resolutions on a regular basis. All queries should be logged centrally so that any problems with data definitions can be treated in a consistent manner throughout the country, plus the log will be used to inform any future review of the data set and data definitions. Queries should include requests for clinical trials etc that are not listed. General Enquiries on the Collection of the Minimum Core Data Set If you have any comments on the attached data definitions ISD would welcome your feedback. Please contact: Kathy Clarke Cancer Information Coordinator ISD Scotland Tel: kathy.clarke@isd.csa.scot.nhs.uk DATABASE SPECIFICATION The database to collect this data set is being developed by WOSCAN. A database specification will be inserted into this document at a later date once development is complete. The specification should be used at all times for downloading data for the national quality assurance programme. Page ii

6 Section 1: Patient Identifiers

7 Patient Forename The first forename of a person represents that part of the name of a person which, after the surname, is the principal identifier of a person. Definitions & Codes for NHSScotland - 6th update April 2002 None. None. National Clinical Data Set Programme Data Proposed Data Item see comments on front cover Page 1

8 Patient Surname The surname of a person represents that part of the name of a person which indicates the family group of which the person is part. Definitions & Codes for NHSScotland - 6th update April 2002 It should be noted that in Western culture this is normally the latter part of the name of a person. However, this is not necessarily true of all cultures. This will, of course, give rise to some problems in the representation of the name. This is resolved by including with the name a preferred name format indicating amongst other things the order of various parts of the name. None. National Clinical Data Set Programme Data Proposed Data Item see comments on front cover Page 2

9 Patient Address at Diagnosis A patient's usual address is the address at which (s)he currently lives and which the patient states is his/her usual address. The address recorded should be the patient s usual address at date of diagnosis which is described elsewhere. Definitions & Codes for NHSScotland - 6th update April 2002 NHS standards for unstructured and structured addresses exist and are applicable in England and Scotland. They can be found in the "Definitions & Codes for NHSScotland" manual produced by ISD Scotland. None. National Clinical Data Set Programme Data Proposed Data Item see comments on front cover Page 3

10 Patient Postcode at Diagnosis The postcode is a basic unit for identifying geographic locations. A postcode is associated with each address in the UK. A postcode has two component parts. Part one of the postcode is known as the outcode, and part two is known as the incode. Outcode The outcode identifies the postal area and postal district. The postal area is represented by 1 or 2 alpha characters and the postal district is represented by 1 or 2 digits. Therefore, part 1 contains 2,3 or 4 characters. Incode The incode is of length 3 characters. The postcode sector is represented by the outcode plus the first digit of the incode. The complete postcode represents the postman s walk. Definitions & Codes for NHSScotland - 6th update April 2002 Details of postcode format can be found in the "Definitions & Codes for NHSScotland" manual produced by ISD Scotland. Where a postcode cannot be determined, contact: The Postcode Helpline at ISD either by telephoning or writing to POSTCODE HELPLINE, ISD, GYLE SQUARE, 1 SOUTH GYLE CRESCENT, EDINBURGH EH12 9EB. Please provide as detailed an address as possible so that the local health authority can be derived. or Call the Post Office Helpline on The postcode recorded should be the normal residence of the patient at the time they were diagnosed with cancer. The instructions for determining a postcode given at the front of the Postcode Directories should be followed. National Clinical Data Set Programme Data Proposed Data Item see comments on front cover Page 4

11 Date of Birth Not applicable. If the patient's date of birth is recorded differently on different occasions, the most frequently used or latest date should be recorded. The patient's full date of birth inclusive of the century should be recorded. The format should be DDMMCCYY. National Clinical Data Set Programme Data Proposed Data Item see comments on front cover Page 5

12 Sex (Gender) The sex of the patient is the genetic sex of the patient, regardless of biological sex or the perception of the patient. None. Sex not known The sex of the person is not provided in the personal details i.e. the data has not been supplied and sex cannot be ascertained from the data provided. Sex not specified The sex of the person cannot be determined for physical reasons, e.g. a new born baby. Definitions and Codes Manual, 6th Update, April 2002 Code Description 0 Not known (not recorded) 1 Male 2 Female 9 Not specified National Clinical Data Set Programme Data Proposed Data Item see comments on front cover Page 6

13 Institute/Hospital of Diagnosis This denotes the hospital location in which the diagnosis of cancer was first made. Details of location codes for hospitals can be found in the "Definitions & Codes for NHSScotland" manual produced by ISD Scotland. See date of diagnosis described elsewhere for details of diagnosis. Location codes are five character codes maintained by ISD Scotland and the General Register Office (Scotland). The first character denotes the health board, the next three are assigned and the fifth denotes the type of location (H=hospital) eg A111H=Crosshouse Hospital G107H=Glasgow Royal Infirmary X1010=Inapplicable X9999=Not recorded National Clinical Data Set Programme Data Proposed Data Item see comments on front cover NOTE: If a patient was provisionally diagnosed at one hospital but transferred to another for confirmation of the diagnosis only e.g. biopsy, then returns to the original hospital, record the first hospital. Page 7

14 Unit Number (Hospital Patient Identifier) The hospital patient identifier is a code which uniquely identifies a patient on the main index of a hospital (i.e. within the hospital health records system). Definitions & Codes for NHSScotland - 6th update April 2002 The code is normally allocated on the patient's first contact with the hospital except where the contact is through Accident & Emergency. If there is more than one unit number record the unit number relating to the institution of diagnosis as described elsewhere. National Clinical Data Set Programme Data Proposed Data Item see comments on front cover Page 8

15 CHI Number The Community Health Index (CHI) is a population register which is used for health care purposes. The CHI number uniquely identifies a person on the index. Currently there are eight CHI databases each covering a defined geographical area and a search index. The search index ensures that people who have a CHI registration on more than one database have one of their CHI numbers allocated as the current and therefore unique CHI number. Definitions & Codes for NHSScotland - 6th update April 2002 It is planned to merge these indexes, together with the NHS Central Register, to form a single national Central Index. This will allow a single, nationally unique identifier to be allocated to each person for health care purposes within Scotland. Discussions with England, Wales and Northern Ireland may extend the use of these unique person identifiers throughout the UK. It is therefore important that all new patient level information systems should define a field which can hold the CHI number. For further information contact: Contact: David Knowles, Secretary CHI/CPC Project Board ISD Scotland, Edinburgh Telephone: David.Knowles@isd.csa.scot.nhs.uk If there is more than one CHI number, record the number relating to the geographical location of diagnosis for cancer. National Clinical Data Set Programme Data Proposed Data Item see comments on front cover Page 9

16 Consultant in Charge This denotes the consultant in charge of the overall management of the patient. The consultant in charge of the patient may be one of the consultants as described by clinician 1-4 elsewhere. The surname and forename of each clinician should be recorded to distinguish between consultants with common surnames. If there are two consultants with the same forename and surname, the specialty of consultant will be required. If the patient is managed by a clinician who is working as a locum, record only that the clinician is a locum consultant. Clinicians names should be stored in databases as General Medical Council (GMC) number. If a clinician s name is not recorded code enter '9999'. If the patient is managed by a team code as inapplicable (1010). If the clinician seeing a patient at a hospital clinic is a GP, or the clinician is described as a trust practitioner, record as GP, rather than the name of the GP. Page 10

17 GP Practice Code This denotes the code of the GP practice where the patient was registered at the time of their referral for investigation of cancer. General Medical Practitioners (or GPs) provide general medical services to the population either in partnership with other General Medical Practitioners or on a single handed basis. The term GP practice covers both partnerships and single handed practices. Each GP practice in Scotland is identified by a unique GP practice code. The practice code is a four digit code plus a check digit with ranges of codes allocated to each NHS Board. Also known as General Practitioner Practice Code (GPPC). Refer to the SMR Data Manual for details on obtaining a practice code. For further information contact: Contact: The Primary Care Administrator at your Primary Care Trust or Joan Forrest, Primary Care Information, ISD Scotland, Edinburgh Telephone: Joan.Forrest@isd.csa.scot.nhs.uk Related terms: NHS Board. Definitions and Codes Manual, 6th Update, April 2002 National Clinical Data Set Programme Data Proposed Data Item see comments on front cover Page 11

18 Section 2: HOSPITAL CLINICIANS AND REFERRAL DETAILS Page 12

19 Date of Referral Date of referral is the date on which a referral is made by a GP or hospital clinician for symptoms suggestive of cancer. This is the date on the referral letter (if there are a number of dates record the date the letter was typed) or fax message, or of the telephone call or and may be the same date as the date on which the referral is received or earlier. If there is not a referral correspondence, the date documented in the case notes should be recorded. If the patient is referred by another hospital clinician while being investigated for a condition unrelated to their cancer (incidental finding), the date the patient was referred for investigation of their cancer should be recorded. For patients where the cancer was detected at a cancer review or genetic clinic, the date the decision was made to refer for further investigation of the cancer should be recorded. For patients referred from screening the date the patient is first referred to a hospital clinician for investigation of their cancer should be recorded. If a patient is referred from general practice but is admitted as an emergency before the clinic date, record date of referral as the original GP referral date. If a patient has not been referred previously by the GP for investigation of the cancer record the date the patient presents to A&E (self or GP referral). The date format should be DDMMCCYY. If the exact date is not documented, record as 09/09/0909. National Clinical Data Set Programme Data Proposed Data Item see comments on front cover Page 13

20 Date Referral Received Date referral received is the date on which a healthcare service receives a referral. This may be the same as the date of referral or later. Also known as Referral Received Date. Definitions and Codes Manual, 6th Update, April 2002 National Clinical Data Set Programme Data Proposed Data Item see comments on front cover Page 14

21 Mode of Referral This denotes the route by which the patient was referred for investigation of signs or symptoms suggestive of cancer. Patients may be referred by a general practitioner to a clinic if the patient presents with symptoms suggestive of cancer requiring further investigation. A general practitioner is a registered practitioner who provides general medical services to the community in partnership with other GPs or on a single-handed basis. Patients presenting at A&E are often referred by their general practitioner (and may already have an outstanding GP referral for cancer) so should be recorded under general practitioner (code 1). Patients without a previous GP referral should be coded as 6 (self referral) or 7 (GP referral). After attending for routine screening in a Screening Programme a patient may be referred for further investigation (screening service). Some patients may be attending or referred to hospital for investigation or treatment of a condition unrelated to their cancer and a tumour is found (incidental finding). Patients may attend an outpatient cancer clinic as they are being followed up for benign disease or a previous cancer (review patient) or because of a strong family history of cancer (genetic clinic). Coding Details Code Specialty 1 General practitioner 2 Screening service 3 Incidental finding 4 Review patient (cancer) 5 Genetic clinic 6 Self-referral to A&E 7 GP referral directly to A&E 8 Previous GP referral but subsequently admitted to A & E 9 Not recorded 11 Dental referral National Clinical Data Set Programme Data Proposed Data Item see comments on front cover Page 15

22 Urgency of Referral This denotes the urgency of referral for investigation of cancer as assigned by the referring GP. Outpatient referral category is the classification of an outpatient referral into urgent, soon and routine as perceived by the source of referral. Urgent - Soon - Routine - for clinical reasons, a patient requires an appointment at the earliest possible opportunity. for clinical reasons, a patient requires an earlier appointment than he/she would receive if given the next available routine appointment. a patient requires the next available routine appointment. Definitions and Codes Manual, 6th Update, April 2002 Coding Details Code Specialty 1 Urgent 2 Soon 3 Routine 9 Not recorded 10 Inapplicable (not GP referral) If a patient has not be referred by a GP then code as inapplicable. National Clinical Data Set Programme Data Proposed Data Item see comments on front cover Page 16

23 Clinician 1-4 Clinicians are consultants who carry clinical responsibility for a patient s healthcare during an episode. The data set allows for the full name of up to four hospital consultants to be recorded. Record, in chronological sequence, the first four consultants seeing the patient for their diagnosis and primary treatment. This also applies to those patients where diagnosis is an incidental finding. Clinician 1 should be the first contact for investigation with a secondary health care consultant that started the referral pathway leading to the diagnosis and subsequent treatment. The surname and forename of each clinician should be recorded to distinguish between consultants with common surnames. If there are two consultants with the same forename and surname, the specialty of consultant will be required. If the patient is seen by a member of the consultant s junior staff, record the name of the consultant in charge of the patient. If the patient is seen by a clinician who is working as a locum, record only that the clinician is a locum consultant. Clinicians names should be stored in databases as General Medical Council (GMC) number. If a clinician s name is not recorded code enter '9999'. If the patient does not see clinician 2, 3 or 4 code as inapplicable (1010). If the clinician seeing a patient at a hospital clinic is a GP, or the clinician is described as a trust practitioner, record as GP, rather than the name of the GP. National Clinical Data Set Programme Data Proposed Data Item see comments on front cover Page 17

24 Specialty of Clinician 1-4 The specialty of the clinician is the specialty in which he/she is formally recognised and contracted to work. A clinician may be formally recognised and contracted to work in more than one specialty; in these cases one specialty is recognised as the main one. If a consultant is recognised in more than one specialty, the patient episode should be recorded under the specialty that best reflects the care given for that patient s problem or condition. The specialty designation of beds is not used to determine patient episode specialty. Definitions and Codes Manual, 6th Update, April 2002 The specialty of up to four clinicians can be recorded. The first specialty should relate to the first hospital clinician recorded in the clinician field, the second for the second clinician etc. If the clinician is a GP this also has a specialty code (see coding details). If the clinician is a locum the specialty should still be recorded. Code A1 A2 A3 A5 A6 A7 A8 A9 AA AB AC AD AF AFA AG AH AK AM AN AP AQ AR C1 C2 Specialty General Medicine Cardiology Clinical Genetics Clin Pharm. & Therap. Communicable Diseases Dermatology Endocrin. & Diabetes Gastroenterology Genito-Urinary Med Geriatric Medicine Homeopathy Medical Oncology Medical Paediatrics Community Child Health Nephrology Neurology Occupational Health Palliative Medicine Public Health Medicine Rehabilitation Med. Respiratory Medicine Rheumatology General Surgery Accident & Emergency Page 18

25 Specialty codes continued Code Specialty C3 Anaesthetics C4 Cardiothoracic Surgery C5 ENT Surgery C6 Neurosurgery C7 Ophthalmology C8 Orthopaedic Surgery C9 Plastic Surgery CA Surgical Paediatrics CB Urology D1 Community Dentistry D3 Oral Surgery D4 Oral Medicine D5 Orthodontics D6 Restorative Dentistry D7 Community Dental Health D8 Paediatric Dentistry E1 General Practice F1 Obstetrics & Gynaecology F1A Well Woman Service F1B Family Planning Service G1 General Psychiatry G1A Community Psychiatry G2 Child & Adolescent Psych G3 Forensic Psychiatry G4 Old Age Psychiatry G5 Mental Handicap G6 Psychotherapy H1 Diagnostic Radiology H1A Breast Screening Service H2 Radiotherapy H3 Nuclear Medicine J1 Pathology J2 Blood Transfusion J3 Clinical Chemistry J4 Haematology J5 Immunology J6 Microbiology J7 Virology 99 Not recorded National Clinical Data Set Programme Data Proposed Data Item see comments on front cover Page 19

26 Date of First Seeing Clinician 1-4 Date of first seeing clinician is the date on which a consultant (or one of his team) first sees a patient for investigation or management of cancer following referral from primary or secondary healthcare. Dates for up to four clinicians can be recorded. The first date should relate to the first clinician in the first specialty, the second for the second clinician etc. The format should be DDMMCCYY. If the exact date is not documented, record as 09/09/0909. The patient may not see clinicians 2, 3 or 4. In this case record 10/10/1010 (inapplicable) where appropriate. National Clinical Data Set Programme Data Proposed Data Item see comments on front cover Page 20

27 Section 3: Historical Data Page 21

28 Prior Exposure to Chemotherapy or Radiotherapy This denotes whether the patient had previously been treated with chemotherapy and/or radiotherapy before the diagnosis of their blood cancer. Chemotherapy is treatment with cytotoxic drugs which destroy cells. Radiotherapy is the treatment of the disease by radiation. Code Description 1 Chemotherapy 2 Radiotherapy 3 Both chemotherapy and radiotherapy 4 None 9 Not recorded Page 22

29 Previous or Concurrent Malignant Disease This denotes whether the patient had previously been diagnosed and treated, or is being treated, for malignant disease. Malignant disease includes all diagnoses of malignant tumours excluding all skin cancers (basal cell carcinomas, squamous cell carcinoma, melanoma). Code Description 1 Yes 2 No 9 Not recorded Page 23

30 Family History of Cancer This indicates the past occurrence and/or present existence of cancer in first or second degree relatives of the patient. A first degree relative is mother, father, sister or brother. A second degree relative is a grandparent, aunt, uncle or first cousin. In recording a family history all skin cancers should be excluded (basal cell carcinomas, squamous cell carcinoma, melanoma). Code Description 1 Haematological 2 Non-haematological 3 Both haematological and non-haematological 4 None 9 Not recorded 10 Inapplicable/not known If the patient is adopted, or for any other reason the patient is unaware of their family history, record as inapplicable (10). Page 24

31 Previous Transplant This denotes whether the patient had received a transplant prior to their diagnosis of cancer. A transplant is where a whole organ (eg heart, liver, kidney) has been transplanted from a donor into the patient before the diagnosis of their current cancer or where the patient may have received eg bone marrow/stem cells. Code Description 1 Kidney 2 Heart 3 Liver 4 Lung 5 Bone Marrow/Stem Cells 6 Other, specify 7 None 9 Not recorded This is a multiple choice field to cover a range of options. Page 25

32 Date of First Transplant This denotes the date of the first transplant recorded elsewhere was undertaken. A transplant is where a whole organ (eg heart, liver, kidney) has been transplanted from a donor into the patient before the diagnosis of their current cancer or where the patient may have received eg bone marrow/stem cells. The format should be DDMMCCYY. If the exact date is not documented, record as 09/09/0909. If no transplant was performed record as inapplicable (10/10/1010). Page 26

33 HIV Related Lymphoma This denotes whether evidence of a HIV infection had been detected. - Code Description 1 Positive blood test 2 Negative blood test 3 No blood test requested from patient 8 Patient refused blood test 9 Not recorded Page 27

34 Coeliac Disease This denotes whether the patient had a history of coeliac disease. Coeliac disease is associated with T cell NHL. Code Description 1 Yes 2 No 9 Not recorded Page 28

35 Section 4: Diagnosis and Management Page 29

36 Date of Diagnosis {Lymphoma} The date of diagnosis is the date on which there was first confirmation of the diagnosis of cancer whether by histology, cytology or haematological methods. If multiple histological, haematological or cytological findings have been reported the date of the first procedure performed confirming the diagnosis of cancer is taken. The date recorded is the date the procedure was performed, not the date the report was issued and should be the first date of confirmation by whatever method The format should be DDMMCCYY. If the exact date is not documented, record as 09/09/0909. Page 30

37 Date of Definitive Diagnosis {Lymphoma} The date of definitive diagnosis is the date on which the most valid basis of diagnosis was obtained whether by histology, haematological or cytological methods. If multiple histological, haematological or cytological findings have been reported the date the procedure was performed providing the most reliable information on the diagnosis should be taken. In practice this will normally be the histological report, if not available definitive diagnosis date should be from haematology and last in order cytology. The date recorded is the date the procedure was performed, not the date the report was issued. In some patients this may be the same date as the date of diagnosis as described elsewhere, if no further procedures were undertaken. The format should be DDMMCCYY. If the exact date is not documented, record as 09/09/0909. Page 31

38 Incidence Date This is the date that the cancer in question becomes formally known to NHS Scotland. The following may prove useful as a guide for determining which date to use: (A) (B) For patients seen as outpatients and/or day cases and/or inpatients (other than long stay or residential) this is the earliest available date from the following: Date of first consultation as an outpatient relating to the diagnosis Date of first pathology report confirming the diagnosis Date of first admission to hospital relating to the diagnosis Date of first hospital-initiated treatment for the condition For long stay or residential patients, or patients receiving care at home: Date of diagnosis (or best estimate) should be used. (C) For death certificate only cases (when follow-up attempts have been unsuccessful),and for cases first diagnosed at autopsy (unsuspected during life): Date of death should be used (D) For patients seen and diagnosed by their GP only. Date of diagnosis (or best estimate) Scottish Cancer Registry Guidelines, Fourth Edition, 2001 The format should be DDMMCCYY. If the exact date is not documented, record as 09/09/0909. National Clinical Data Set Programme Data Proposed Data Item see comments on front cover This field should be computable. Page 32

39 Type of Specimen(s) This denotes the type of specimen(s) that was submitted for investigation that resulted in the diagnosis of blood cancer. If there is more than one report record the first that resulted in the diagnosis of blood cancer. If there is more than one specimen on the first report record all specimens. This is a multiple choice field. Code Description 1 Fluid - (Pleural, Pericardial, Ascitic) 2 FNA 3 Blood 4 Bone marrow 5 Core biopsy 6 Excision biopsy 7 Endoscopic biopsy 8 Biopsy, not otherwise specified (ie ex lymph node and performed 9 Not d recorded i ll ) 11 Surgical Resection Page 33

40 Site of Specimen This denotes the site from where a specimen was taken for investigation that resulted in the diagnosis of lymphoma. None. E=extranodal N=Nodal CODE DESC E/N 1 CERVICAL N 2 PRE-AURICULAR N 3 POST-AURICULAR N 4 PAROTID N 5 SUBMANDIBULAR N 6 SUBMAXILLARY N 7 OCCIPITAL N 8 SUBMENTAL N 9 SUPRACLAVICULAR N 10 INFRACLAVICULAR N 11 AXILLARY N 12 PECTORAL N 13 INTERCOSTAL N 14 LUNG HILAR N 15 RETROCRURAL N 16 SPLENIC HILAR N 17 COELIC N 18 PARA-AORTIC N 19 PORTA HEPATIS N 20 MESENTERIC N 21 RETROPERITONEAL N 22 ILIAC N 23 INGUINAL N 24 FEMORAL N 25 EPITROCHLEAR / BRACHIAL N 26 OTHER NODAL N 27 BONE E 28 BRAIN E 29 SPINAL CORD E 30 SKIN E 31 SUBCUTANEOUS E Page 34

41 CODE DESC E/N 32 CERVIX E 33 OVARY E 34 VAGINA E 35 LABIA E 36 TESTIS E 37 UTERUS E 38 PROSTATE E 39 BLADDER E 40 KIDNEY E 41 OESOPHAGUS E 42 STOMACH E 43 SMALL BOWEL E 44 LARGE BOWEL E 45 RECTUM E 46 OMENTUM E 47 PERITONEUM E 48 LIVER E 49 PANCREAS E 50 GALLBLADDER E 51 ADRENAL E 52 PAROTID SALIVARY GLAND E 53 SUBMANDIBULAR SALIVARY GLAND E 54 ORBIT E 55 EYELID E 56 THYMUS E 57 MEDIASTINUM E 58 THYROID E 59 SINUS E 60 NOSE E 61 NASOPHARYNX E 62 TONGUE E 63 OROPHARYNX E 64 PALATE E 65 GUM E 66 BUCCAL E 67 LARYNX E 68 TRACHEA E 69 BRONCHUS E 70 LUNG E 71 PLEURA E 72 BREAST E 73 CARDIAC E 74 CHEST WALL E 75 EAR E Page 35

42 CODE DESC E/N 76 EXTRADURAL E 77 LACRIMAL E 78 MUSCLE E 79 WALDEYERS RING N 80 SPLEEN N 81 OTHER EXTRANODAL E 82 MULTIPLE SITES 99 NOT RECORDED Page 36

43 Laboratory Report Number This is the reference number of the specimen resulting in the diagnosis of cancer. If there is more than one report (from several procedures), record the reference number of the first report as this will enable all other reports to be tracked. If no specimen submitted record as inapplicable. Code as 'N/R' if the number is not recorded. Page 37

44 Laboratory This denotes the hospital laboratory issuing the report described by the laboratory number. None. Code A210H A111H C206H C418H C313H F704H G107H G207H G306H G405H G516H H202H L106H L305H L302H N101H S116H S226H T101H T202H V201H V102H Y104H X9999 X1010 Institution THE AYR HOSPITAL CROSSHOUSE HOSPITAL VALE OF LEVEN DISTRICT GENERAL HOSP ROYAL ALEXANDRA HOSPITAL INVERCLYDE ROYAL HOSPITAL VICTORIA HOSPITAL, KIRKCALDY GLASGOW ROYAL INFIRMARY STOBHILL HOSPITAL VICTORIA INFIRMARY, GLASGOW SOUTHERN GENERAL HOSPITAL, GLASGOW WESTERN INFIRMARY/GARTNAVEL GENERAL RAIGMORE HOSPITAL MONKLANDS HOSPITAL, AIRDRIE WISHAW HOSPITAL HAIRMYRES HOSPITAL, EAST KILBRIDE ABERDEEN ROYAL INFIRMARY WESTERN GENERAL HOSPITAL, EDINBURGH ROYAL INFIRMARY, EDINBURGH NINEWELLS HOSPITAL PERTH ROYAL INFIRMARY STIRLING ROYAL INFIRMARY FALKIRK & DISTRICT ROYAL INFIRMARY DUMFRIES & GALLOWAY ROYAL INFIRMARY NOT RECORDED INAPPLICABLE Page 38

45 Date Laboratory Report Approved This is the date on which the laboratory report described by the laboratory report number was approved. This date could be several days after the specimen was received by the laboratory. If the report does not include an approval date the date the report was issued should be recorded. The date format should be DDMMCCYY. If the exact date is not documented, record as 09/09/0909. Page 39

46 Most Valid Basis of Diagnosis This denotes the best evidence in support of the diagnosis of cancer. The conclusion of a diagnosis of cancer may be based on one or several procedures; clinical findings or as a report on the death certificate. Histological confirmation is considered as the most valid basis of diagnosis. The methods of diagnosis are listed in essentially ascending order of validity, microscopic methods having greater validity than non-microscopic methods. Code Description 1 Clinical only the diagnosis is based solely on clinical findings (history and/or physical examination). This is made before death but without the benefit of the following: 2 Clinical investigation -- the diagnosis is supported by investigations such as x-ray, CT scan, ultrasound etc. 3 Exploratory surgery/endoscopy/autopsy (without concurrent or previous histology) the tumour has been visualised or palpated but there is no confirmatory microscopic evidence 4 Tumour specific markers (biochemical/immunological tests) the diagnosis is supported by specific tests 5 Cytology the diagnosis is supported by cytology (the examination of cells whether from a primary or secondary site). 6 Histology of metastasis the diagnosis is based on the histology of a metastasis (secondary deposit), e.g. resulting from a lymph node biopsy 7 Histology of primary the diagnosis is based on the histology of the primary either resulting from a biopsy or from complete resection of the tumour. 8 Autopsy (with histology) --the diagnosis is based on the findings at autopsy supported by concurrent or previous histology. 10 Death Certificate only the only information available to the registry is from a death certificate. 9 Not known (not recorded) recorded Scottish Cancer Registry Guidelines, Fourth Edition, 2001 National Clinical Data Set Programme Data Proposed Data Item see comments on front cover Page 40

47 WHO Classification This denotes the WHO classification of the blood cancer. There may be several classifications cited on the pathology report e.g. Kiel classification, Working formulation, Revised European American) (REAL) The WHO classification should be recorded. If in doubt, check with the local clinician. Hodgkin s Lymphoma CODE DESC 9659/3 NODULAR LYMPHOCYTE PREDOMINANT HODGKIN LYMPHOMA 9663/3 NODULAR SCLEROSIS CLASSICAL HODGKIN LYMPHOMA 9652/3 MIXED CELLULARITY CLASSICAL HODGKIN LYMPHOMA 9653/3 LYMPHOCYTE-DEPLETED CLASSICAL HODGKIN LYMPHOMA 9651/3 LYMPHOCYTE-RICH CLASSICAL HODGKIN LYMPHOMA 9650/3 UNCLASSIFIABLE (SPECIFY) Non-Hodgkin s Lymphoma CODE DESC 9723/3 (B CELL) LYMPHOBLASTIC 9823/3 (B CELL) B-CLL / LYMPHOCYTIC LYMPHOMA 9671/3 (B CELL) LYMPHOPLASMACYTIC 9673/3 (B CELL) MANTLE CELL LYMPHOMA 9690/3 (B CELL) FOLLICULAR CENTRE LYMPHOMA 9695/3 (B CELL) FOLLICULAR CENTRE LYMPHOMA - GRADE I 9691/3 (B CELL) FOLLICULAR CENTRE LYMPHOMA - GRADE II 9698/3 (B CELL) FOLLICULAR CENTRE LYMPHOMA - GRADE III 9699/3 (B CELL) MARGINAL ZONE LYMPHOMA 9699/3 (B CELL) MARGINAL ZONE LYMPHOMA - EXTRANODAL 9689/3 (B CELL) SPLENIC MARGINAL ZONE LYMPHOMA 9680/3 (B CELL) DIFFUSE LARGE B CELL LYMPHOMA 9687/3 (B CELL) BURKITT'S LYMPHOMA 9687/3 (B CELL) BURKITT'S LYMPHOMA - TYPICAL 9687/3 (B CELL) BURKITT'S LYMPHOMA - ATYPICAL 9970/1 B CELL POST TRANSPLANT LYPHOPROLIFERATIVE DISORDER 9591/3 (B CELL) OTHER B CELL (SPECIFY) 9727/3 (T CELL) LYMPHOBLASTIC 9702/3 (T CELL) PERIPHERAL T CELL LYMPHOMA UNSPECIFIED 9705/3 (T CELL) ANGIOIMMUNOBLASTIC T CELL LYMPHOMA 9717/3 (T CELL) EXTRANODAL NK / T CELL LYMPHOMA NASAL TYPE 9717/3 (T CELL) INTESTINAL T CELL +/- ENTEROPATHY Page 41

48 CODE DESC 9827/3 (T CELL) ADULT T CELL LYMPHOMA / LEUKAEMIA HTLV /3 (T CELL) ANAPLASTIC LARGE CELL LYMPHOMA ALK- 9714/3 (T CELL) ANAPLASTIC LARGE CELL LYMPHOMA ALK+ 9702/3 (T CELL) OTHER T CELL (SPECIFY) 9591/3 UNCLASSIFIABLE AS B OR T (SPECIFY) Primary Cutaneous CODE DESC 9700/3 (T CELL) MYCOSIS FUNGOIDES 9700/3 (T CELL) PAGETOID RETICULOSIS 9718/3 (T CELL) CD30 +VE CUTANEOUS LARGE T CELL LYMPHOMA 9718/3 (T CELL) LYMPHOMATOID PAPULOSIS 9701/3 (T CELL) SEZARY SYNDROME 9709/3 (T CELL) UNCLASSIFIABLE CUTANEOUS PERIPHERAL T CELL LYMPHOMA 9690/3 (B CELL) FOLLICLE CENTRE CELL LYMPHOMA 9699/3 (B CELL) MARGINAL ZONE LYMPHOMA / IMMUNOCYTOMA 9680/3 (B CELL) INTRAVASCULAR CUTANEOUS B CELL LYMPHOMA 9680/3 (B CELL) UNCLASSIFIABLE CUTANEOUS B CELL LYMPHOMA 9591/3 (B CELL) UNCLASSIFIABLE AS B OR T (SPECIFY) Histiocyte and Dendritic Cell Neoplasms CODE DESC 9751/1 LANGERHAN'S CELL HISTIOCYTOSIS 9750/3 OTHER (SPECIFY) Mastocytosis CODE DESC 9741/3 MASTOCYTOSIS (SPECIFY) Page 42

49 Site of Origin of Tumour (Type of Disease) This denotes the anatomical (site of) origin of the primary tumour. - The site is coded according to the International Statistical Classification of Diseases and Related Health Problems, Tenth Revision, World Health Organisation classification (ICD10). ICD10 C81 C82 C83 C84 C85 C99.X Description Hodgkin s disease Follicular (nodular) Non-Hodgkin s Lymphoma Diffuse Non-Hodgkin s Lymphoma Peripheral and Cutaneous T-cell Lymphomas Other and unspecified Non-Hodgkin s Lymphoma Not recorded Note: This field is required for cancer registration and should be computable from WHO classification. National Clinical Data Set Programme Data Proposed Data Item see comments on front cover This field will be computable from WHO classification. Page 43

50 Section 5: Diagnostic Data Page 44

51 Haemoglobin This denotes the level of haemoglobin (Hb) detected in the patient s blood when they were investigated for cancer. The level recorded should normally be the first result after referral and before transfusion or treatment. Hb should be recorded in g/l. If no level is recorded then record as Page 45

52 WBC Total This denotes the total white blood cell count in the patient s blood when they were first investigated for cancer. The level recorded should normally be the first result after referral and before treatment. WBC total should be recorded in 10 9 /l. If no blood count is recorded then record as Page 46

53 WBC Differential - Neutrophils This denotes the neutrophil count in the patient s blood when they were first investigated for cancer. A WBC differential is a measure of an individual component (neutrophil) of the total white blood cell count. The level recorded should normally be the first result after referral and before treatment. Neutrophils should be recorded in 10 9 /l. If no blood count is recorded then record as Page 47

54 WBC Differential - Lymphocytes This denotes the lymphocyte count in the patient s blood when they were first investigated for cancer. A WBC differential is a measure of an individual component (lymphocytes) of the total white blood cell count. The level recorded should normally be the first result after referral and before treatment. Lymphocytes should be recorded in 10 9 /l. If no blood count is recorded then record as Page 48

55 Platelets This denotes the platelet count in the patient s blood when they were first investigated for cancer. The level recorded should normally be the first result after referral and before treatment. Platelets should be recorded in 10 9 /l. If no blood count is recorded then record as Page 49

56 Bone Marrow Aspirate This denotes whether the patient had been investigated by undertaking a bone marrow aspirate and the findings reported from the cell sample. A bone marrow aspirate involves removing cells from the bone marrow by suction. This test should have been performed after referral and before treatment for cancer. Dry tap is where no sample has been taken. Code Description 1 Positive 2 Negative 3 Suspicious 4 Inadequate 5 Dry tap 6 Not performed 9 Not recorded Page 50

57 Bone Marrow Trephine This denotes whether the patient had been investigated by obtaining a sample using a trephine and the findings reported from the sample. A bone marrow trephine involves removing a core of bone marrow. This test should have been performed after referral and before treatment for cancer. Code Description 1 Positive 2 Negative 3 Inadequate 4 Not performed 9 Not recorded Page 51

58 LDH This indicates whether the level of lactate dehydrogenase (LDH) as measured at the time the patient was investigated for cancer was normal. The level recorded should normally be the first result after referral and before treatment. LDH may sometimes be referred to as LD. Code Description 1 Normal 2 Abnormal 3 Not performed 9 Not recorded Note: Details need to be obtained from each laboratory regarding the documented reference standards. Page 52

59 Albumin This indicates the serum level of albumin at the time the patient was investigated for cancer. The level recorded should normally be the first result after referral and before treatment. Albumin should be recorded in g/l. If no level is recorded then record as If no test was performed record as in applicable Page 53

60 WHO/ECOG Performance Status The WHO/ECOG performance status is an overall assessment of the functional/physical performance of the patient. The WHO/ECOG performance status is a grade on a five point scale (range 0 to 4) at the time of investigation in which '0' denotes normal activity and '4' a patient who is 100% bedridden. If it is not documented in case notes do not deduce from other information and record as 'not recorded'. WHO/ECOG status should be recorded after staging and before treatment. Code Description 0 Fully active, able to carry on all pre-disease performance without restriction 1 Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, eg light housework, office work 2 Ambulatory and capable of self care but unable to carry out any work activities: up and about more than 50% of waking hours 3 Capable of only limited self care, confined to bed or chair more than 50% of waking hours 4 Completely disabled, cannot carry out any self care, totally confined to bed or 9 Unknown (not recorded) National Clinical Data Set Programme Data Item see comments on front cover Page 54

61 Date of First CT Scan This denotes the date on which the first CT scan was performed in relation to this episode of cancer. None. The format should be DDMMCCYY. If the exact date is not documented, record as 09/09/0909. If no CT scan was performed record as inapplicable (10/10/1010). Page 55

62 Cotswold Clinical Stage This denotes the clinical stage of the patient prior to the start of their treatment for lymphoma according to the Cotswold classification. The Cotswold Staging Classification is also known as the Ann Arbor Staging Classification, or the Revised Ann Arbor System. Treatment depends both on the stage of the disease and whether or not symptoms are present. Stages are labelled with an A if no symptoms are present. If symptoms are present, the stage is labelled with a B. B symptoms are described elsewhere. Stag I IE II IIE III IIIE Description The disease is confined to one lymph node area (eg cervical, axillary, mediastinal) or lymphoid structure (eg spleen, Waldeyer s ring) The disease extends from the one lymph node area to adjacent regions Single extra lymphatic site as only site of disease The disease is in two or more lymph node areas on one side of the diaphragm (the muscle below the lungs) eg bihilar disease The disease extends to adjacent regions of at least one of these nodes Extra nodal site which is contiguous or proximal to a known site The disease is in lymph node areas on both sides of the diaphragm The disease extends into adjacent areas or organs (IIIE) IIISE The disease extends into adjacent areas or organs and/or the spleen (IIISE) IV The disease has spread from the lymphatic system to one or more other organs, such as the bone marrow or liver 9 Not recorded Page 56

63 Manchester Stage This denotes the clinical stage of the patients with gastrointestinal lymphoma prior to the start of their treatment. Gastrointestinal lymphomas are defined as tumours originating in the stomach, small or large intestine. Stag Ia Ib IIa IIb Description Tumour confined to one area of the gastrointestinal tract without penetration of the serosa. Multiple tumours confined to the gastrointestinal tract without penetration of the serosa. 'Tumour with local nodes radiologically/histologically involved (gastric or mesenteric).' Tumour with perforation and/or adherence to adjacent structures. IIc III IV Tumour with perforation and peritonitis. Tumour with widespread nodal involvement (para-aortic or more distant nodes). Disseminated disease involving extra-lymphatic tissues not adjacent to the tumour (eg liver, bone marrow, bone, lung etc). 8 Not staged 9 Not recorded 10 Not applicable Record as inapplicable if lymphoma is not gastrointestinal. Page 57

64 B Symptoms This denotes the presence of one or more B symptoms in the patient at presentation for investigation of the cancer. The following symptoms are classified as B Symptoms: Night sweats - should be drenching Weight loss - should exceed 10% body weight in the last 6 months Fever - requires careful history and, ideally, confirmation by thermometry Alcohol pain and itch are not B symptoms. Code Description 1 Yes 2 No 9 Not recorded Page 58

65 Bulk Disease This indicates whether bulk disease was present at the time the patient was investigated for cancer. This should have been assessed after referral and before treatment for cancer. Bulk disease is defined as by Cotswold criteria (Lister et al, 1989). The bulk of palpable lymph nodes will be defined by the largest dimension (cm) of a single node or conglomerate nodal mass in each region of involvement. A node or nodal mass must be 10cm or greater to be recorded as bulky. Abdominal nodal bulk is defined by the largest dimension (cm) of a single node or conglomerate nodal mass using CT, MRI, lymphography, or ultrasonography. A node or nodal mass must be 10cm or greater to be recorded as bulky. The overall amount of disease in the spleen will not be quantitatively assessed using imaging procedures. Lesions within the liver or spleen may be measured for assessment or response but the measurements will not be recorded for staging purposes. A mediastinal mass will be defined as bulky on a 6ft posterior anterior chest radiograph, when the maximum width is equal to or greater than one-third of the transverse diameter of the thorax at the level of T5/6 interspace. The chest radiograph should be taken with maximal inspiration in the upright position at a source-skin distance of 2m. For the SNLG prognostic index, (See page 66), a mediastinal mass of 5cm is significant. Code Description 1 Yes Mediastinal ( 5cm 9 cm) 2 Yes Mediastinal ( 10cm) 3 Yes Other ( 5cm 9 cm) 3 Yes Other ( 10cm) 4 None 5 Not assessed 9 Not recorded Page 59

66 Origin of Disease {Lymphoma } This indicates whether the origin of the cancer was within nodal or extranodal sites. Nodal sites are: Cervical, pre-auricular, post-auricular etc (as per SNLG list). Extranodal sites are: Bone marrow, bone, peripheral blood, etc (as per SNLG list). Code Description 1 Nodal 2 Extranodal 3 Unsure 9 Not recorded 10 Inapplicable If the patient is not assessed, record as inapplicable. E=extranodal N=Nodal CODE DESC E/N 1 CERVICAL N 2 PRE-AURICULAR N 3 POST-AURICULAR N 4 PAROTID N 5 SUBMANDIBULAR N 6 SUBMAXILLARY N 7 OCCIPITAL N 8 SUBMENTAL N 9 SUPRACLAVICULAR N 10 INFRACLAVICULAR N 11 AXILLARY N 12 PECTORAL N 13 INTERCOSTAL N 14 LUNG HILAR N 15 RETROCRURAL N 16 SPLENIC HILAR N 17 COELIC N 18 PARA-AORTIC N 19 PORTA HEPATIS N 20 MESENTERIC N Page 60

67 CODE DESC E/N 21 RETROPERITONEAL N 22 ILIAC N 23 INGUINAL N 24 FEMORAL N 25 EPITROCHLEAR / BRACHIAL N 26 OTHER NODAL N 27 BONE E 28 BRAIN E 29 SPINAL CORD E 30 SKIN E 31 SUBCUTANEOUS E 32 CERVIX E 33 OVARY E 34 VAGINA E 35 LABIA E 36 TESTIS E 37 UTERUS E 38 PROSTATE E 39 BLADDER E 40 KIDNEY E 41 OESOPHAGUS E 42 STOMACH E 43 SMALL BOWEL E 44 LARGE BOWEL E 45 RECTUM E 46 OMENTUM E 47 PERITONEUM E 48 LIVER E 49 PANCREAS E 50 GALLBLADDER E 51 ADRENAL E 52 PAROTID SALIVARY GLAND E 53 SUBMANDIBULAR SALIVARY GLAND E 54 ORBIT E 55 EYELID E 56 THYMUS E 57 MEDIASTINUM E 58 THYROID E 59 SINUS E 60 NOSE E 61 NASOPHARYNX E 62 TONGUE E 63 OROPHARYNX E 64 PALATE E Page 61