Honest, personalized conversations about prognosis for young people with cancer

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

RIGHTimeCPV is a feasibility and acceptability intervention that asks patients, caregivers, and clinicians to identify and document individualized preferences for prognostic communication and then integrate those preferences into routine disease-evaluation visits. The intervention uses a five-part process in which a patient or parent selects a communication preferences companion (CPC), the CPC reviews materials and a conversation guide with research staff, conducts a templated CPV visit with the patient/parent (audio-recorded), discusses the documented preferences with the oncologist, and then attends the next re-evaluation visit with the oncologist and patient/parent. Data collection includes demographics at enrollment and audio-recorded encounters during training and CPV visits, with follow-up to explore sustained clinician practice and effects on communication quality and prognostic concordance. The trial plans to enroll roughly 52–85 participants across St. Jude and affiliate sites including patients, parents, CPCs, and pediatric oncologists.

Why it matters

Who can join: the full rules

Inclusion Criteria: Patients

* 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

Inclusion Criteria: Parents/Caregivers

* 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)

Inclusion Criteria: Oncologists

* 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

Inclusion Criteria: Communication Preferences Companions (CPCs)

* 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

Exclusion Criteria:

* Does not meet the stated inclusion criteria

Where it's running

• St. Jude Children's Research Hospital
  Memphis, Tennessee, United States Recruiting

Study contacts

• Principal investigator: Erica C. Kaye, MD, MPH — St. Jude Children's Research Hospital
• Study coordinator: Erica C. Kaye, MD, MPH
• Email: referralinfo@stjude.org
• Phone: 866-278-5833

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.