Revealing Information Genuinely & Honestly Across Time - Communication Preferences Visit
Revealing Information Genuinely & Honestly Across Time - Communication Preferences Visit (RIGHTimeCPV) Pilot
St. Jude Children's Research Hospital
85 participants
Jun 16, 2025
INTERVENTIONAL
Conditions
Summary
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
Inclusion Criteria11
- 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
- Parent or other self-identified caregiver of a patient of any age with poor prognosis cancer (as defined above)
- Pediatric oncologists who treat eligible patients/caregivers at the study site, St. Jude Children's Research Hospital (SJCRH) or its included affiliates:
- Peoria, IL: The Jim and Trudy Maloof St. Jude Midwest Affiliate Clinic
- Charlotte, NC: Novant Health Hemby Children's Hospital
- Shreveport, LA: Ochsner LSU Health-Feist-Weiller Cancer Center
- Multidisciplinary clinicians from a participant's psychosocial or nursing care team, identified by that participant to serve as their 'communication preferences companion' (CPC) during the pilot
- Provides clinical care to pediatric cancer patients under the auspices of psychology, social work, spiritual care, child life, cultural navigation, quality of life/palliative care, or nursing
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Interventions
* Patient/parent identifies and selects a communication preferences companion (CPC) * CPC and patient/parent meet for a Communication Preferences Visit (CPV) * Oncologist, patient/parent, and CPC attend next disease re-evaluation visit together.
* CPC reviews intervention materials and conversation guide with the research team * CPC and patient/parent meet for a CPV, and CPC documents patient/parent preferences in a templated form * CPC and oncologist discuss the CPV form * Oncologist, patient/parent, and CPC attend next disease re-evaluation visit together.
* CPC and oncologist discuss the CPV form * Oncologist, patient/parent, and CPC attend next disease re-evaluation visit together
Locations(1)
View Full Details on ClinicalTrials.gov
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NCT06993688