St. Jude Childhood Cancer Survivorship PRO Study (CCSPRO)
Advances in pediatric cancer therapy and comprehensive follow-up care have improved the 5-year survival rate of childhood cancers from less than 60% in 1970 to more than 80% today. However, children who survive from cancer may have significant chronic conditions as a result of therapy.
We will be recruiting 400 dyads of childhood cancer survivors and their parents from a diverse group of pediatric patients who have undergone anticancer therapy at St. Jude Children's Research Hospital. We have recruited 100 dyads for Aim 1 and will recruit 300 dyads for Aims 2-4. This unique clinical care center is one of the largest pediatric cancer hospitals in North America and has the largest and most comprehensive long-term childhood cancer survivorship program in the US. An innovative feature of this study is the evaluation of PROs among childhood cancer survivors who will serve as a comparison group to children with cancer who are actively undergoing treatment within the Duke Center cancer project.
The purpose of the study is to evaluate the content validity (Aim 1), clinical meaning of PRO scores, responsiveness, and longitudinal construct validity (Aims 2-4) for 6 PROMIS pediatric instruments in cancer survivors:
Positive affect (happiness)
Meaning & Purpose
Psychological Stress Experiences
Data collection for the content validity aim of the study (Aim 1) has been completed and is currently being analyzed
The semi-structured interviews and card-sorting task that were conducted will allow researchers to understand if pediatric cancer survivors’ experiences are different than the general population in the above pediatric PROMIS instruments
If so, the instruments will be adapted to reflect childhood cancer survivors’ experiences and will then be tested in the longitudinal portion of the study, set to begin August 2017