12.1 Follow-Up Purpose, Active & Passive Methods, and Follow-Up Source Codes
Key Takeaways
STORE requires follow-up at least annually for all living Class of Case 10–22 patients; CoC does not require Class 00 cases or foreign residents to be followed.
Follow-up also completes missing first-course treatment, for example when surgery is delayed six months or more after Date of First Contact, or when planned therapy is coded 88 or 8 as a tickler.
Active follow-up contacts a physician, the patient, or another facility directly; passive follow-up links registry records to outside files such as death indexes, hospital admissions, or motor vehicle and Medicare records.
Follow-Up Source [1790] records where the latest information came from: 0 reported hospitalization, 1 readmission, 2 physician, 3 patient, 4 DMV, 5 Medicare or Medicaid, 7 death certificate, 8 other, 9 unknown.
Next Follow-Up Source [1800] records the planned method: 0 chart requisition, 1 physician letter, 2 contact letter, 3 phone call, 4 other hospital contact, 5 other, 8 foreign resident (not followed), 9 not followed.
Why registries follow patients
The CoC standard on follow-up says it plainly: "Long-term follow-up is essential to evaluate outcomes of cancer care," and accurate follow-up data let a program compare its outcomes with regional, state or national statistics. Follow-up supports:
- Survival analysis, which needs an accurate date of last contact or death and vital status for every patient (Section 7.5).
- Recurrence and disease-free interval, which measure how well first-course treatment worked (Section 12.4).
- Complete first-course treatment, because an abstract is often finished before all planned therapy is given.
- Quality measures and research, including NCDB benchmark reports and special studies.
- Continuity of care, because registry contact can remind patients and physicians about surveillance visits.
What STORE says must be followed
STORE's "Outcomes" chapter lists the follow-up duties for CoC programs:
- Obtain follow-up at least annually for all living Class of Case 10–22 patients in the registry database.
- Complete first-course treatment information:
- when Rx Summ–Surg 2023 [1291] is delayed six months or more after Date of First Contact [580];
- for Readmission to the Same Hospital Within 30 Days of Surgical Discharge [3190] after the most definitive surgery;
- for radiation, chemotherapy, hormone therapy, immunotherapy, transplant or endocrine procedures, or other treatment that was planned but not started or finished at the last follow-up. "Reason for no" codes 88 or 8 act as ticklers to flag incomplete treatment.
- Once all planned first-course treatment is recorded, treatment items no longer need follow-up.
- Follow recurrence until a recurrence is reported or the patient dies (Section 12.4).
- Keep Date of Last Contact or Death [1750], Follow-Up Source [1790] and Next Follow-Up Source [1800] current while the patient is alive.
- Once the death and all care before death are recorded, stop follow-up.
Exemptions: CoC does not require Class of Case 00 cases to be followed (since January 1, 2006), and registries are not required to follow foreign residents. CoC Standard 6.5 also exempts cases reportable by agreement and patients over 100 years old with no contact for more than 12 months when computing follow-up rates (Section 12.2).
Active versus passive follow-up
| Active follow-up | Passive follow-up | |
|---|---|---|
| How | The registry contacts a source directly and asks for the patient's status | The registry matches its records against outside files without contacting anyone |
| Examples | Letters, portal messages or calls to the following physician; letters or calls to the patient or a contact person; queries to another hospital | State death files and the National Death Index; hospital admission and discharge feeds; state central registry updates; motor vehicle or Medicare/Medicaid records; obituaries and online death indexes |
| Strengths | Gives cancer status and recurrence detail from a physician | Efficient for large populations; finds deaths the physician may not know about |
| Weaknesses | Staff time, postage, response rates, patient burden | Usually gives only vital status and date; missing a match does not prove a patient is alive |
| Typical user | Hospital registries meeting CoC follow-up rates | Central registries and population-based survival programs |
Most hospital registries combine both. They routinely check the facility's own admissions and outpatient visits and match against death files, then send physician letters for patients still not current. Central registries depend mainly on linkage, including state and national death files, because population-based survival needs vital status for everyone.
Sources CoC names
Standard 6.5 lists methods "including, but not limited to":
- The following or managing physician.
- The program's inpatient or outpatient services.
- Pathology reports or death certificates.
- Internet sources, such as death indexes, patient locator software and obituary listings.
- Communication with other facilities.
Privacy considerations
Follow-up is a registry operation that uses protected health information. Disclosures to a state registry are permitted as public health reporting under HIPAA (Section 2.1). Many facilities require the managing physician's permission before the registry contacts a patient directly, and letters should not reveal the diagnosis on the envelope or to anyone other than the patient. Check facility and state policy.
Follow-Up Source [1790]
| Code | Label | Meaning |
|---|---|---|
| 0 | Reported hospitalization | Hospitalization at another institution, or first admission to the reporting facility |
| 1 | Readmission | Hospitalization or outpatient visit at the reporting facility |
| 2 | Physician | Information from a physician |
| 3 | Patient | Direct contact with the patient |
| 4 | Department of Motor Vehicles | DMV confirmed a current license |
| 5 | Medicare/Medicaid file | Medicare or Medicaid office confirmed the patient is alive |
| 7 | Death certificate | Information from the death certificate only |
| 8 | Other | Friends, relatives, employers, other registries, or other sources |
| 9 | Unknown | Source unknown or not stated |
Next Follow-Up Source [1800]
| Code | Planned method |
|---|---|
| 0 | Chart requisition |
| 1 | Physician letter |
| 2 | Contact letter |
| 3 | Phone call |
| 4 | Other hospital contact |
| 5 | Other, NOS |
| 8 | Foreign residents (not followed) |
| 9 | Not followed; other cases for which follow-up is not required |
Key rule: who can update cancer status
Contact from the patient or family updates Date of Last Contact or Death and Vital Status, but not Cancer Status. STORE allows Cancer Status to change only on information from the patient's physician or another official source, such as a death certificate (Section 12.3).
A registry's annual physician letter is returned with the note "Patient seen in clinic 08/14/2026, no evidence of disease." How is Follow-Up Source [1790] coded?
2, physician
1, readmission
3, patient
8, other
Which of these is an example of passive follow-up?
Mailing a follow-up letter to the patient's oncologist
Telephoning the patient's designated contact person
Matching the registry database against the state death file and the facility's admission records
Sending a query to the hospital where the patient receives chemotherapy
According to STORE, which case must a CoC-accredited registry follow at least annually?
A Class of Case 00 patient diagnosed at the facility and treated elsewhere
A resident of Mexico treated at the facility
A living Class of Case 14 patient diagnosed and treated at the facility
A Class of Case 32 patient admitted for recurrence after treatment elsewhere
Sections you finish are checked off in the contents.