Po/03/03 Registrations made on receipt of Death Certificate (DC) notifications

Site: All Sites
Implementation date: 01/01/2004
Implement from diagnosis date:
Agreed by: UKACR EC
Date agreed by: 07/10/2003The C&CG recommend that:1) Registries should process death certificate notifications on receipt, or as soon as possible thereafter, to facilitate access to information from other sources, particularly from General Practice (GP) records.

2) If a death certificate is received and there is already information on the database regarding that patient or tumour, the usual matching and merging rules for assessing the validity of evidence from differing sources should be applied in deciding:

a) Whether to make a new registration or not, or
b) Whether to amend an existing registration.
3) All DC notifications processed in the absence of other source records (e.g. pathology) about that tumour are registered with a Death Certificate Initiated (DCI) status. These registrations retain their DCI status permanently, irrespective of the outcome of follow-up.4 These DCI registrations are also given the status of 'potential' DCOs at this time. Follow-up of all DCI registrations is started on registration by requesting:
a) Access to GP records by, e.g.

i) Using open Exeter or contacting Health Authorities/PCTs to obtain GP details
ii) Sending a brief questionnaire to GPs or accessing GP notes

b) Access to hospital records
5) A full registration is subsequently made for the tumour, if corroborative evidence of a cancer diagnosis is found either in hospital notes, or supplied by the GP in the questionnaire or found in GP notes, with the 'potential' DCO status removed.Where the Death cert states C76 or C80 (unknown site) and a primary tumour is already registered for that patient then a new primary should not be added.  With the exception of Basal cell carcinoma.
NB: a new primary may be added if investigations confirm this is a new tumour eg different morphology small cell/non small cell.  6) The DCI registration is subsequently cancelled (but a record kept of the transaction), if a refutation of cancer is found either in the discharge summary following investigations, or in the GP notes following, say, a domiciliary consultation, or in a PM report, and cancer was excluded, with the 'potential' DCO status
removed.7) All other DCI registrations must be counted as Death Certificate Only (DCO) registrations at the time of analysis, i.e. those registrations for which the DC information is the only information available. Whatever system is used by the registry to identify DCOs, it must be able to count and report separately
a) Confirmed ('true') DCOs (with the 'potential' DCO status altered to 'true' DCO), i.e. when

i) GP and/or hospital records have been found, but there is no information either confirming or refuting the diagnosis of malignancy in them, or
ii) Confirmation has been received that no clinical notes are available, and

b) DCI registrations being followed-up ('potential' DCOs), i.e. medical records have been requested, but

i) No responses have yet been received about the availability of either GP or hospital records, or
ii) One set of records has been confirmed to be missing or has been found but contains inadequate or insufficient information, AND no response has yet been received about the availability of the second set.

A flowchart summarising the recommended procedure is available as Appendix Po/03/03. For illustrative purposes the flow chart is annotated to show how it might be implemented in a registry able to set flags on its system. In addition, detailed explanatory notes are provided.While analyses for comparative indicators will in future focus on the number of sources per registration, implementation of this recommendation will enable registries to keep track of DCIs, those converted into full registrations, those cancelled (not registered because not registerable condition), confirmed 'true' DCOs, and 'potential' DCOs still being followed up.Update:RSG 19 September 2007
Textual description added to the end of paragraph 5.