Requirements of Governing Agencies

The outcomes data items describe the known clinical and vital status of the patient.

Governing agencies have different follow-up target rates and different timelines for considering a patient lost, but the principle of following all alive patients until they die remains critical for providing survival statistics.

Surveillance, Epidemiology and End Results (SEER)

SEER requires registries to update follow-up information on all cases on an annual basis.  Vital status information is obtained for all patients alive as of the last follow-up. Cause of death information is obtained for deceased patients. For all cases with a primary invasive cancer, SEER requires a follow-up percentage of no less than 80 percent for cases diagnosed under the age of 20 with 90% or more as the data quality goal; no less than 80 percent for cases diagnosed between the age of 20 to 64 with 90% or more as the data quality goal; and no less than 90 percent for cases diagnosed at the age of 65 or older with 95% or more as the data quality goal. For all cases with an in situ primary cancer, SEER requires a follow-up percentage of no less than 80 percent with 90% or more as the data quality goal.

Commission on Cancer (CoC)

Follow-up information is obtained at least annually for all analytic Class of Case 10-22 (Refer to STORE Manual) patients included in a hospital cancer registry’s database. Recorded follow-up data should reflect the most recent information available to the hospital registry that originates from reported patient hospitalizations, known patient readmissions, contact with the patient’s physician, and/or direct contact with the patient.

• The CoC requires approved hospital cancer programs to meet or exceed the target rate of 90 percent successful follow-up. The follow-up rate is calculated on all eligible patients, both living and dead. The successful follow-up rate for eligible living patients is set by the CoC at 80 percent. https://www.facs.org/quality-programs/cancer/coc/standards
• The CoC considers a case to be lost to follow-up (also referred to as delinquent), when there is no record of their health status after 15 months since the known date of last contact. An institution may request its registry to follow certain patients with various tumor types, sites, or stages more frequently than annually.

Patients who are lost to follow-up (delinquent) should remain in the follow-up system until follow-up is obtained. The follow-up system must be audited periodically to determine that all patients lost to follow-up remain in the system and are continually pursued for current follow-up.

The CoC requests follow-up statistics at the time of an institution’s site visit; the follow-up calculations are part of the Pre-Review Questionnaire (PRQ) to show compliance with the CoC’s follow-up standard criteria. Most cancer registry software systems have a programmed report for calculating these statistics.

Once the patient’s death has been recorded and all care given prior to death is recorded, no further follow-up is performed.

ONLY Central registries conduct passive follow-up procedures, in which follow-up status is obtained through national (SEER and NPCR funded National linkages) and individual state data linkages, as well as through hospital follow-up exchange. For successful passive follow-up data linkages, central registries must have the correct patient identifiers, such as social security numbers, names, and date of birth. Central registries also perform active follow-up utilizing various methods or resources that are not available to hospital registries (see Methods section under Requirements in this module).

Your state/central registry is a great resource for obtaining follow-up information. Contact your state/central registry representative for information about how to obtain this information!

Updated: December 11, 2023