Development of a Scale to Measure Fear of Cancer Recurrence in Survivors of Childhood Cancer


Survivors of adult cancers often experience fear of cancer recurrence. This is the worry that one’s cancer will return. Fear of recurrence negatively impacts mental health. It can also burden our healthcare system due to unnecessary medical visits and testing. Children may experience fear of recurrence differently than adults.
However, almost no research has studied fear of recurrence in survivors of childhood cancer. In fact, we have no way to measure fear of recurrence experienced by survivors of childhood cancer.

The purpose of this project is to develop a questionnaire to measure fear of recurrence in survivors of childhood cancer.

We will invite survivors of childhood cancer currently between the ages of 8-18 to participate. First, we will conduct 10 small focus groups to better understand fear of recurrence. After the focus groups we will create a list of possible questionnaire items. Second, we will ask 50 child survivors to read a pool of items and tell us which items are unclear or confusing. Third, we will ask 100 child survivors to answer the remaining questionnaire items. From there, we will use statistical analyses to decide which items to keep in the final questionnaire.

This research is the first step to better understanding fear of cancer recurrence experienced by survivors of childhood cancer. The resulting questionnaire will help to inform future work aimed at improving health outcomes.


Currently recruiting participants: Yes

Eligible ages: 8 to 18

Accepts healthy participants: Yes

Inclusion criteria:

We are looking for participants who:
1) have a history of cancer
2) have completed active treatment
3) are currently 8-18 years of age
4) can fluently speak and read English
5) do not have a major developmental or psychological disorder (e.g., Down’s syndrome, psychosis)
6) are a current resident of Canada or the USA


Fill out the following form if you want to participate in this research

Method of contact

Additional information

Contact information

For more information or to participate, please email the study coordinator, Brooke Russell, at

Principal investigator:

Fiona Schulte

Clinical trial: