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Requirements
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Cases and Frequency
All reportable cases are followed, except the following
- Residents of foreign countries
- Cases reportable by agreement
- Patients whose age exceeds 100 years and who are without contact for more than 12 months
- Patients diagnosed on or after January 1, 2006 and classified as Class of Case 00 (Refer to STORE Manual)
Methods
The Tumor Registry Department follows all cancer patients on a yearly basis after they have been diagnosed and given first course of treatment. The steps involved in the follow-up process can be quite extensive as well as rewarding.
Active follow-up: Conducted by hospital and central registry personnel. With active follow-up, registry personnel perform actual follow-up processes.
Passive follow-up: Conducted by central registry or hospital registry personnel through various methods. With passive follow-up, registry staff relies on other resources to provide follow-up information.
| Active Follow-Up | Passive Follow-Up |
|---|---|
| Hospital Electronic Medical Record (EMR) – check for recent visits; inpatient and/or outpatient visits | Hospital data linkage (Central Registry function only) |
| Letter or phone call to patient (*see sample letter in Sources and Other Contacts) | Letter to secondary contact (listed as authorized contact in EMR) (*see sample letter in Sources and Other Contacts) |
| Physician letter (*see sample letter in Sources and Other Contacts) | Obituaries |
| State Vital Statistics Department | |
| State Cancer Registry (upon request - *may not apply to every state) | |
| Letter to outside hospital registry (*see sample letter in Sources and Other Contacts) |
Cancer Registry Follow-up Duties
Monthly Follow-Up List
A monthly list generated from the cancer registry software at the beginning of each month containing names of patients that are 12-15 months delinquent in the registry database. The number of patients varies each month. Each patient from the list is reviewed in the electronic medical record system for any recent inpatient or outpatient visits. If a recent date is found, the patient is immediately updated in the registry database to bring the file to current status. Some patients will most likely remain delinquent until a return visit or contact is established. If the patient has not returned to the institution, follow-up letters are usually mailed to the managing or referring physician or to other physicians involved in the care of the patient (see sample letters in the follow-up letters section below).
Central registries often initiate follow-up with state or federal agencies (see internet or other sources below).
Letters or Phone Calls (see sample letters in the follow-up letters section below)
Letters are mailed out to patients not located by other methods as a final attempt. The letter includes a brief questionnaire to be filled out and returned in a postage-paid returned envelope. Once received, the patient file in the registry database is updated.
If the patient does not fill in the date on the questionnaire, record the date stamped on the envelope as the date of last contact. Do not record the date of last contact as the date the letter was mailed to the patient or when the request was initiated.
If a patient has multiple primary cancers, all records should be updated with the date of last contact. Because the status of each cancer can be different, each cancer status is updated independently.
If a response has not been received, letters are mailed to new sources until all potential sources have been exhausted. Attempts should be made periodically to contact all patients who do not have current follow-up. By doing so, the registry can reduce the number of patients that are lost to follow-up and improve the registry's follow-up rate.
Computerized Registries
A computerized registry is more efficient than a manual registry, and the Commission on Cancer of the American College of Surgeons now requires approved cancer programs to maintain computerized records. Registry software systems incorporate abstracted follow-up information into appropriate fields within the system. Computerized registries rely on the software to compute the follow-up due date.
Internet or Other Sources (*some sources are only available to central registries)
- Find A Grave
- Obits archive.com
- https://www/legacy.com/
- http://tributes.com/
- Local, state, or national obituaries – most available online
State (Central) Cancer Registry – available upon request- State Voter Registration and/or Motor Vehicle Websites
- State Vital Statistics Department
- State Department of Corrections
- Federal Bureau of Prisons
- Social Security Administration (SSA)
- National Death Index
- Immunization Records
- Centers for Medicare and Medicaid (CMS)
- State Education and Early Detection programs
- Indian Health Services
Verification of the patient is vital to ensure the patient listed in an online obituary is the same patient in the registry database. This can be confirmed by matching date of birth (DOB), next of kin or emergency contact information, occupation and industry information.
Personnel Requirements and Resources
An adequate staff and budget must be provided to handle the follow-up volume. The staff must be trained and qualified to represent the institution in this process. The work area must be quiet during communication with patients and other contacts. Equipment needs will affect budgetary considerations.
The follow-up function of the registry can enhance public relations of the institution. The person conducting follow-up must convey professionalism and be knowledgeable about available resources and general institutional information. This person must be comfortable talking about cancer with others, because this subject can be disturbing to the contacts.
A telephone is mandatory when managing follow-up procedures. The person conducting follow-up should have access to a computer, the Internet, and software for working with the registry and the hospital electronic medical record system.
Sources and Other Contacts
The follow-up process actually begins with the initial abstracting process. All information that may be useful for follow-up must be abstracted. If a patient is transferred to another hospital for treatment the registry or other department there should be listed as a follow-up contact. Other follow-up contacts can include home care, nursing homes, or hospices. It is helpful to document any unusual circumstances such as blindness, hearing difficulties, or any language barriers the patient may have.
Other possible sources such as the county tax assessor offices and motor vehicle departments are useful sources and have been reported by registry personnel as effective tools; however, the cancer committee or governing body must authorize the registry staff to utilize them. The method and dialogue of follow-up must be designated by the cancer committee.
Population-based registry records include all hospitals that have seen a patient, and serve as a repository for the best follow-up information upon request.
Follow-Up Letters (sample letters below)
- Letters to Physicians [PDF - 90.5 KB]
- Letter to Hospital Registry [PDF - 124 KB]
- Letter to Patient/Secondary Contact [PDF - 140 KB]
Conclusion
The primary purposes of follow-up are to ensure continued medical surveillance to determine outcomes of the treatment, and to monitor the health status of the cancer population. Required data items should reflect the most recent information available to the cancer registry that originates from reported patient hospitalizations, known patient readmissions, contact with the patient’s physician, and/or direct contact with the patient. SEER and the CoC require different a minimum percentage rates for successful follow-up. Various sources are available for cancer registry staff to obtain follow-up information. Follow-up letters may be necessary to send to different contacts when a patient is considered lost to follow-up or no recent visit to the healthcare organization.
Updated: December 11, 2023