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
patient, if desired) will be asked to complete a survey.
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