Revealing Information Genuinely & Honestly Across Time - Communication Preferences Visit

Launched by ST. JUDE CHILDREN'S RESEARCH HOSPITAL · May 23, 2025

Keywords

ClinConnect Summary

This clinical trial, called "Revealing Information Genuinely & Honestly Across Time - Communication Preferences Visit," aims to improve how patients with cancer and their families talk about what to expect in the future regarding the illness and its impact on their lives. The study will focus on creating personalized ways to discuss a patient's prognosis, which means understanding how their condition might affect their health and quality of life. Researchers want to gather feedback from young patients aged 12-25 with difficult-to-treat cancers, their parents or caregivers, and the doctors who treat them to see if this new communication approach is helpful and acceptable.

To participate, young patients must be diagnosed with a serious cancer and have a chance of survival estimated at 50% or less. They should also be expected to have follow-up appointments in the next six months but not be nearing the end of life in the coming three months. Parents or caregivers of these patients, as well as the healthcare team members who provide support, can also join the study. Participants will have discussions focused on their communication preferences, which helps ensure that everyone understands each other better and feels supported during their cancer journey. This trial is not yet recruiting participants, but it represents an important step toward enhancing communication about cancer care.

Gender

ALL

Eligibility criteria

• • 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
• • 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