Recruitment

Recruitment Status
Recruiting
Estimated Enrollment
156

Summary

Conditions
  • Brain Tumors
  • Solid Tumor
Type
Observational
Design
Observational Model: Family-BasedTime Perspective: Prospective

Participation Requirements

Age
Younger than 125 years
Gender
Both males and females

Description

Data collection will occur at each disease reevaluation, during which time the conversation will be audio-recorded and data will be abstracted from the medical record. Additionally, 2 surveys will be completed at specific time points by both the oncologist and the parent. Lastly, interviews will be ...

Data collection will occur at each disease reevaluation, during which time the conversation will be audio-recorded and data will be abstracted from the medical record. Additionally, 2 surveys will be completed at specific time points by both the oncologist and the parent. Lastly, interviews will be offered to both the oncologist and the parent/patient following any audio-recorded conversation in which difficult news was discussed. Disease reevaluation will be defined as any of the following interventions performed for the purposes of assessing disease status: Diagnostic imaging Lumbar puncture with cerebrospinal fluid analysis Bone marrow aspiration and/or biopsy Surgical biopsy or resection The first time point for data collection with be at the time of the patient's first meeting with their oncologist to discuss the results of disease reevaluation. This discussion will be audio-recorded. The parent will be asked to complete a survey within 7 days. Those receiving difficult news will have the opportunity to participate in a brief interview with a study team member regarding their experience. Patients who are at least 12 years old will also have this opportunity, separate from their parents, if desired by the patient and approved by the parent. Interviews may be in person or by phone and have no set length. The next time point for data collection will coincide with any time the patient/parents meet with their oncologist to discuss results of a disease reevaluation. Each conversation will be audio-recorded. If difficult news is delivered during the discussion, the parent and oncologist will be asked to complete a second survey for first bad news conversation, following the baseline recording. Parent, patient, and oncologist will be asked to participate in an interview for all bad news conversation. Patient-parent dyads will be followed for a total of 24 months from the time of enrollment on study (defined as the date of first audio recording rather than date of actual consent), in the context of patients who do not experience disease relapse, progression, or refractory disease. Dyads in which patients experience disease relapse, progression, or refractory disease will be followed for a total of 24 months from the time of first disease relapse or progression while on study. All data analyzed from audio-recordings will be permanently erased from recorders following completion of data analysis. Participants may request to discontinue to the study at any time.

Tracking Information

NCT #
NCT02846038
Collaborators
Not Provided
Investigators
Principal Investigator: Erica Kaye, MD St. Jude Children's Research Hospital