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California Cancer Registry Volume I: Data Standards and Data Dictionary Source: Cancer Reporting in California: Abstracting and Coding Procedures for Hospitals (California Cancer Reporting System Standards, Vol. I), updated May 2007 |
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California Cancer Registry Volume I: Data Standards and Data Dictionary Source: Cancer Reporting in California: Abstracting and Coding Procedures for Hospitals (California Cancer Reporting System Standards, Vol. I), updated May 2007 |
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A very important aspect of the California cancer reporting system is the annual monitoring of patients throughout their lives to ascertain survival rates. If any follow-up information is available before an abstract is submitted, include it in the abstract. Hospitals with cancer programs approved by ACoS must update follow up data annually (consult ACoS Guidelines for requirements). Obtain the information from medical records (if the patient has been readmitted), the patient's physician, contact letters, and telephone calls. Any follow-up information obtained must be reported to the regional registry. Annual follow-up is not required for a hospital that does not have a tumor registry and is submitting an abstract only to meet state reporting requirements. The CCR does not impose follow-up requirements beyond what a hospital chooses to do for its own purposes. For example, if a hospital elects not to follow cases of carcinoma in situ of the cervix, or non analytic cases, the CCR will not expect to receive follow-up information for such cases. Information entered in the CNExT follow-up information fields is transmitted automatically to the regional registry.
The CCR requires follow-up on all benign and borderline CNS tumors as well as borderline ovarian tumors.
Beginning with cases diagnosed January 1, 2006 forward, the CCR no longer requires follow-up on class 0 cases. Follow-up is still required for class 0 cases diagnosed prior to 2006. This is consistent with the CoC follow-up requirement change for 2006.
Some follow-up data items are optional for reporting to the CCR but might be required by the ACoS, for shared follow-up involving other institutions, or by the reporting hospital for in house data. The CCR's required items are:
Follow-up information must be based on documentation of a contact with the patient in the form of direct response to a letter or phone call to the patient or other contact, a report by the patient's physician, readmission to the hospital as an inpatient or outpatient, or a death certificate. It might be necessary to trace the patient through such agencies and organizations as the registrar of voters, welfare agencies, labor unions, religious groups, or the Office of the State Registrar for a death certificate.
Information must be current. Currency is defined as contact with the patient within 15 months of the date the follow up is reported. Updated information that is not current should still be reported.
In those cases where a patient is being followed by more than one hospital, the regional registry may designate a hospital responsible for follow up in an effort to prevent physicians and patients from receiving requests for information from many sources. Shared follow-up which discloses the source or name of the hospital requires a signed agreement from each participating registry. Otherwise, follow-up may be shared without a signed agreement as long as the source is not disclosed. However, this does not preclude a hospital registry's submission of more current information about its patients. Shared follow up is instituted only by agreement among participating hospitals in a region.
