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| ID | Type | Description | Link |
|---|---|---|---|
| NCI-2021-12350 | Registry Identifier | NCI Clinical Trial Registration Program |
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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
Specific Aim 2
This study will have two phases.
Phase 1:
Investigators will define key stakeholder preferences and recommendations for timing, content, and delivery of prognostic communication across the advancing illness course and bereavement. Eligible parents and patients will participate in semi-structured interviews on prognostic communication preferences, stratified by cohort: poor-prognosis diagnosis, advancing disease, phase I/II trial enrollment, and bereavement; eligible oncologists will complete interviews on prognostic disclosure preferences. Participants will participate in a single interview that will last anywhere from 30 to 60 minutes.The interview will be audio-recorded and transcribed. Participant demographic and social determinants of health information will be collected.
Phase 2:
Investigators will partner with a smaller group of stakeholders (parents, patients, and oncologist) from phase 1 to develop a clinical communication guide to help improve communication between patients, families, and cancer doctors. The panel will meet across 4 sessions to develop a conceptual framework that explains the interconnecting variables influencing stakeholder preferences and to design a prognostic communication intervention (i.e., a RIGHTime communication guide) that encourages oncologists to provide individualized, timely prognostic disclosure.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Patients | Three distinct sub-cohorts will be targeted for recruitment to represent perspectives across the advancing illness course: patients ≤3 months from a poor- prognosis diagnosis (cohort 1), patients ≤ 3 months from disease relapse or progression (cohort 2), and patients actively enrolled on a phase I/II trials (cohort 3).For cohorts 1-3, patient-parent dyads will be enrolled when eligible; however, an independent patient is eligible for enrollment if the parent consents for the patient's enrollment but declines his/her own enrollment. | ||
| Parents | Four distinct sub-cohorts of parents will be targeted for recruitment, including cohorts 1-3 and a fourth bereavement cohort. For cohorts 1-3, patient-parent dyads will be enrolled when eligible; however, an independent parent is eligible for enrollment if the patient declines enrollment, but the parent wishes to participate. | ||
| Oncologist | Pediatric oncologists who treat or refer patients for treatment at St. Jude Children's Research Hospital (SJCRH) will be eligible to participate. |
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| Measure | Description | Time Frame |
|---|---|---|
| Prognostic Communication Preferences | We will use the rapid analysis (RA) qualitative approach for analysis of interview transcripts methods to define patient, parent, and oncologist preferences and recommendations with respect to timing, content, and delivery of prognostic communication at varying timepoints across the advancing illness course. | Within 60 days of enrollment |
| Variables influencing stakeholder preferences | We will use a participatory design approach with user-centered design methods, we will convene a Stakeholder Panel comprising patients, parents, oncologists, and researchers that will meet across 4 sessions to develop a conceptual framework that explains the interconnecting variables influencing stakeholder preferences and to design a prognostic communication intervention (i.e., a RIGHTime communication guide) that encourages oncologists to provide individualized, timely prognostic disclosure. | After completion of all interviews; 4 sessions over a period of approximately 1-2 years |
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Inclusion Criteria:
Patients
Parents
Oncologists
Exclusion Criteria:
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Patients, parents and Oncologist meeting the eligibility criteria.
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| Name | Affiliation | Role |
|---|---|---|
| Erica C. Kaye, MD, MPH | St. Jude Children's Research Hospital | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| St. Jude Children's Research Hospital | Memphis | Tennessee | 38105 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 42084190 | Derived | Christianson C, Farner H, Heidelberg RE, Brandt H, Hinds P, Mack JW, Kaye EC; RIGHTime Communication Collaborative. Codesigning Communication Interventions With Adolescents, Parents, and Clinicians in Pediatric Oncology: A Feasibility Study. Pediatr Blood Cancer. 2026 Jul;73(7):e70382. doi: 10.1002/1545-5017.70382. Epub 2026 May 5. |
| Label | URL |
|---|---|
| St. Jude Children's Research Hospital | View source |
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| Clinical Trials Open at St. Jude | View source |
| ID | Term |
|---|---|
| D009369 | Neoplasms |
| D003142 | Communication |
| ID | Term |
|---|---|
| D001519 | Behavior |
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