Does this image depict how you feel when running your registry’s lost to follow-up calculations? One of the most frequently asked support questions we receive is, “Why are my follow-up rates not going up? I have entered new follow-up entries and the lost to follow-up percentage stays the same! HELP!!”

Let’s talk about doing monthly follow-up and lost to follow-up. Important! These are two separate functions and should be done in conjunction with each other, and not one versus the other. In helping customers examine why their follow-up rates are not increasing, we frequently discover that they are only working the lost list and not working the current follow-up, those cases just coming due for follow-up at twelve months. 

There are two basic prongs to performing follow-up. First, the cases that are due for follow-up should be found and updated. These are eligible cases whose date of last contact is between 12 and 15 months prior. These cases should be attempted before they become lost. If not, the lost to follow-up percentages will get higher in large chunks and lower the follow-up rate. Finding and updating these cases before they become lost is the key.

The second prong is working the lost list. These are cases where the date of last contact is greater than 15 months. Updating these cases is absolutely the ONLY way the lost percentages decrease.

Interesting fact: If large groups of cases are updated with the same last date of contact, either manually or by an import, these same cases all become due for follow-up and/or are considered lost on the same date.

What are some additional tools that can be utilized to help with follow-up? 

• Is your registry taking advantage of our casefinding and follow-up imports from the facility’s EMR, Pathology, Medical or Radiation Oncology solutions? If so, ensure that the follow-up feature is turned on to update the date of last contact. If not, contact us for more information about user-initiated and automated interfaces. 
• Has the registry considered using an outside company that specializes in finding lost cases? We can automatically import these cases into CRStar. One thing to keep in mind when utilizing a company like this: while updating the date of last contact information, vital status and current address, they do not have the ability to look for recurrence and subsequent treatment information. Your registry will need to have processes in place to find this important information.
• Does your state offer a state follow-up or state deathlist file? If so, we can automatically import this data into CRStar. Check with your state’s central cancer registry. 
• Many government offices are willing to share information with cancer registries. Consider contacting your state or county’s vital statistics departments, DMV or county tax offices. 

In closing, there are some very important facts to remember!

• Run and update the current monthly follow-up to prevent patients from becoming lost. These cases have a date of last contact prior to 15 months. Updating these cases DO NOT have any bearing on the lost rates, but will keep them from slipping into the lost category.
• Run and update lost to follow-up patients to decrease lost rates. These are cases with a date of last contact greater than 15 months. Updating these cases is the ONLY way to decrease the percentage of people lost to follow-up, therefore increasing the percentage of successful follow-up.