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Coronavirus Update:What patients and families need to know

Measuring Child-Reported Symptoms, Functional Status and Treatment Toxicity Experiences

Children being treated for acute and chronic illnesses can experience symptoms from both the illness itself as well as from its treatment. If the child is not asked to report the functional consequences of the illness and its treatment, the full disease impact remains unknown and the symptoms may be undertreated. Our team has continued to lead the assessment of the pediatric Patient Reported Outcomes Measurement Information System (PROMIS) in children receiving treatment for various cancers, as well as in survivors of childhood cancer. Outcomes include:

  • Acceptability of the PROMIS measures to children and adolescents
  • Ability of children with advanced and incurable cancer to complete the forms
  • Different forms of validity achieved by these measures in this patient group
  • Highly similar measurement outcomes from the pediatric PROMIS measures as compared to previously well-validated and established pediatric instruments for child reporting of symptoms and function

With collaborative funding awarded in 2015, the team is pursuing studies to address the clinical usefulness of these pediatric PROMIS measures. In addition, the team continues to co-lead an eight site study to create and validate a child-reported cancer treatment toxicity measure. Outcomes include final lists of core and expanded treatment toxicities validated by children 7 to 18 years of age, development of parallel parent report toxicity measures and validated directions and response options for both sets of measures and construct validity from 275 children, parents and their clinicians.

Meet the Team