NCT05116566Completed
Revealing Information Genuinely & Honestly Across Time: Pediatric Oncology Stakeholder Preferences and Recommendations for Prognostic Communication
Source: ClinicalTrials.gov · Last updated 21 Oct 2024
Brief summary (registry, in English)
This study is being conducted to better understand the preferences and recommendations of patients and parents regarding optimal ways to share prognostic communication. Specifically, to learn what stakeholders (i.e., patients, parents, and doctors) believe to be the "right" content, timing, and delivery of this important information. Specific Aim 1 * To define key stakeholder preferences and recommendations for timing, content, and delivery of prognostic communication across the advancing illness course and bereavement. Specific Aim 2 * To engage stakeholders in the design of a patient/parent centered RIGHTime framework and communication intervention to promote individualized, timely prognostic disclosure.
- Status (registry)
- Completed
- Study type
- Observational
- Enrollment
- 95 (actual)
- First submitted
- 1 Nov 2021
- Start date
- 18 Jun 2022
- Primary completion date
- 14 Aug 2024
- Lead sponsor
- St. Jude Children's Research Hospital
- Diseases
- Childhood cancers
- NCT number
- NCT05116566
What you commit to
- Study type: Observational
- Participants enrolled: 95
- From 18 Jun 2022 to the primary completion date, 14 Aug 2024
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other
- Does not meet the inclusion criteria.
Who the study is looking for
- Patients
- Aged 12-25 years
- Recent diagnosis (\< 3 months) of a poor prognosis cancer with an estimated survival of 50% or less by the primary oncologist (cohort 1) OR recent history of disease relapse/progression within the past 3 months (cohort 2) OR active enrollment on a phase I/II trial (cohort 3).
- English-speaking
- Parents
- Aged 18 years or older
- Parent (or legal caregiver) of a child with cancer of any age who meets the above criteria for cohorts 1-3 OR of a child who died from cancer 6-24 months from enrollment (cohort 4).
- English-speaking
- Oncologists
- Pediatric oncologists who treat patients at SJCRH or who refer patients for treatment to SJCRH
Age in the registry: 12 years to - · Sex: All · Accepts healthy volunteers
Sites (1)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| St. Jude Children's Research Hospital Coordinator of this site? Confirm its status | Memphis | United States | Unknown status |
Related publications
- Codesigning Communication Interventions With Adolescents, Parents, and Clinicians in Pediatric Oncology: A Feasibility Study.Pediatr Blood Cancer · 2026 · PMID 42084190
This page is information, not medical advice. Discuss any trial with your doctor.