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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.

BACKGROUND

  • 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:

    • Pain interference

    • Fatigue

    • Positive affect (happiness)

    • Meaning & Purpose

    • Psychological Stress Experiences

    • Stigma

STUDY AIMS

  • 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

GOALS