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Follow-up is a challenge for patients who were younger than 20 years old at the time of their diagnosis. This is because they are more likely to move out of their area in adulthood, be diagnosed and/or treated while in college in a different area from their home, and many years may have passed since their diagnosis.
Cancer is the leading cause of disease-related death in the adolescent and young adult population. For reasons such as this, SEER has a specific data quality marker for capturing follow-up information for patients under 20 years of age. As part of the SEER contract, SEER registries must reach at least 90 percent of follow-up on cases diagnosed at age 20 or younger. SEER does not direct registries on how to collect this follow-up information. In this article, staff members from the Louisiana Tumor Registry and New Jersey State Cancer Registry provide their best practices on capturing this follow-up information.
Louisiana Tumor Registry
Linkages: Routine and Innovative Approaches to Capturing Follow-up Information for Cases Diagnosed Under the Age of 20
It comes as no surprise that it is a challenge to conduct follow-up on individuals diagnosed under the age of 20 (<20s). Incomplete Social Security Number (SSN) information at time of diagnosis and the inability to use people search software due to the lack of credit, court records, and property ownership are only some of the obstacles SEER registries have worked to overcome. It is important to note that as the time between a registry’s reference date and the current reporting year increases, the <20s move into adulthood, adding an additional layer of complications. Over the last 10 years, the Louisiana Tumor Registry (LTR) has adopted a number of activities in order to locate the <20s and to maintain a follow-up rate of at least 90%.
Although the majority of Follow-up tasks that LTR performs fall under the umbrella of passive follow-up through data linkages, many of the activities in locating the <20s require aspects of active follow-up. There are far fewer challenges in following a dependent child within a few years of their diagnosis. Difficulties in conducting follow-up come when the <20s enter adulthood. Because of this, LTR likes to approach follow-up by separating the <20s into two groups. Group 1 contains dependent children still under the age of 18 and Group 2 contains individuals now aged 18 years and older. The following will summarize some of the follow-up activities that LTR has undertaken based on these groupings.
Group 1 - Under 18
- LTR’s Hospital Follow-up Exchange - A patient’s continued interaction with the facility where they were diagnosed and treated allows LTR to utilize their Hospital Follow-up Exchange to locate the <20s. The exchange is an initiative of the LTR that allows us to compare follow-up data with CoC facilities in Louisiana through linkage and share current follow-up information when available. This resource is not limited to children and can benefit all follow-up within the registry.
- Louisiana Immunization Network for Kids Statewide (LINKS) – The LTR is able to access Louisiana’s vaccination database and perform active follow-up on the <20s who are still under the age of 18. All immunizations administered to individuals under the age of 18 in Louisiana are required to be documented in LINKS. For each vaccination, the location, date of administration, and vaccine serial number are captured. View-only access to LINKS allows the LTR to see which children received a vaccination in Louisiana and use that date as the alive date of last contact for that individual.
Group 2 – Age 18 and Older
- The US Selective Service – More commonly known as The Draft, the US Selective Service allows users to verify registration via their website. The utility of this search is limited to males at the time of their 18th birthday but does allow the registry to locate a small number of individuals and verify the SSN on file. Going forward, a verified SSN allows this cohort to be linked amongst the adult passive follow-up resources.
- Louisiana’s Hospital Inpatient Discharge Data (LA-HIDD) – The Louisiana Department of Health collects inpatient hospital data from licensed hospitals in Louisiana and is estimated to cover 75% of all hospital inpatient bed utilization in the state. The LTR’s access to LA-HIDD is used to aid case finding and death clearance. A blind search of this database is not advised, as it is time-consuming with a small yield. However, searching for women who are now at childbearing age has provided information on cases long lost to follow-up. Furthermore, just as the selective service allows us to verify the SSN of males in the database, LA-HIDD affords us the same for women as well as the addition of married surnames, all of which assist passive linkages going forward.
Author: Christina Lefante, MPH, CTR
Follow-Up/Special Study Coordinator
Louisiana Tumor Registry
New Jersey State Cancer Registry
Follow-up for patients under 20 years of age
The New Jersey State Cancer Registry (NJSCR) uses data from a variety of sources to meet the SEER requirement of 90% follow-up for patients diagnosed under the age of 20. One such source is an annual data linkage with the New Jersey Immunization Information System (NJIIS). NJIIS serves as the official repository of immunizations administered to children and adults in New Jersey. The NJIIS has been operating since 1997 and contains over 2,895,143 demographic records of children, whose parents have previously consented to participate in the system. Most children are already enrolled in the system through the Electronic Birth Certificate (EBC) record process. Each year approximately 80,000 more newborns are enrolled into the system.
Because NJSCR and NJIIS are both housed within the New Jersey Department of Health’s Epidemiology, Environmental and Occupational Health Services Branch, no formal data sharing agreement is required; but in 2016, the programs formalized the relationship with a signed memorandum of understanding.
Each year, at the request of NJSCR, the NJIIS submits a file to NJSCR containing records of patients who have been immunized in the previous 18 months. Each record includes the patient’s name, date of birth, address and date of most recent vaccination. Files are pre-processed using SAS before importing into SEER*DMS as supplemental records. Auto-consolidation is performed for date of last contact, follow-up source and birthplace. Each NJIIS file, containing an average of 100,000 unique patient records, results in updates to approximately 100 NJSCR patients and an increase in pediatric follow-up of just over 4 percentage points. While not a significant source of follow-up in and of itself, when combined with follow up information from linkages with the NJ Motor Vehicle Commission, uniform billing data, and the Social Security Administration, NJIIS data is an important part of achieving a 90% follow-up rate for patients diagnosed under the age of 20.
Author: Stephanie M. Hill, MPH, CTR
New Jersey State Cancer Registry
