About this trial
The purpose of this research study is to obtain insights and feedback from patients and parents about a new approach to support conversations about how cancer may affect one's future life and quality of life (i.e., prognostic communication). This study involves creating a personalized approach to discussing prognosis.
Primary Objectives
* To evaluate the feasibility of implementing the RIGHTimeCPV intervention among pediatric oncology patients, caregivers, and clinicians (referred to herein as "shareholders"). * To assess the acceptability of the intervention across the shareholder groups.
Secondary Objectives
* To explore the potential impact of the RIGHTimeCPV intervention on communication quality, concordance in prognostic understanding, and therapeutic alliance between patients/families and multidisciplinary clinicians. * To explore whether the practice of eliciting, sharing, and honoring individualized communication preferences is sustained by clinicians after participation in the RIGHTimeCPV intervention.
Eligibility criteria
Qualifiers
Aged 12-25 years diagnosed with poor prognosis cancer (high risk or otherwise difficult to treat cancers), as defined by a pediatric oncologist estimating odds of overall survival as 50% or less
Anticipated by a pediatric oncologist to have one or more disease re-evaluation timepoints over the next six months
Not anticipated by a pediatric oncologist to approach end of life in the next three months
Aged 18 years or older and/or legally emancipated
Disqualifiers
Does not meet the stated inclusion criteria
Trial design
Treatments tested in this trial
- Prognostic Communication-Patient/parent
- Prognostic Communication-CPC
- Prognostic Communication-Oncologist
Treatment groups
Sponsors and collaborators
St. Jude Children's Research Hospital
Lead sponsor
National Cancer Institute (NCI)
Collaborator