Understanding Communication in Healthcare to Achieve Trust (U-CHAT)

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, 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.

Inclusion Criteria - Primary Oncologist:

- Primary oncologist is an attending physician (age 18+) who provides medical care to
patients in the outpatient Solid Tumor or Neuro-Oncology clinics at St. Jude
Children's Research Hospital.

- Primary hematology-oncology fellows (age 18+) who follow patients along with the
primary oncologist will be eligible to participate in audio-recorded disease
reevaluation conversations (and fellow contributions will be distinguished from
primary oncologist contributions); however, they will not be eligible to complete
post-conversation surveys nor semi-structured interviews.

Inclusion Criteria - Parents of Children with Cancer:

- Caregiver is 18 years of age or older.

- Caregiver is related to the patient in one of the following ways: biological parent,
stepparent, or primary legal guardian.

- If more than 1 set of parents are involved, the caregiver with legal decision-making
responsibilities will be eligible for participation.

- Caregiver is comfortable speaking and reading English.

Inclusion Criteria - Patients:

- Patient's primary oncologist is enrolled in this study.

- Patient (age ≤30 years) has been diagnosed with either a solid tumor and/or a brain
tumor.

- Patient's primary pediatric oncologist documents or reports his/her impression that
patient's likelihood of cure is 50% or less.

- Patient is projected to have ≥ 2 future time points of disease reevaluations, as
documented in the electronic medical record (EMR) and/or confirmed by the patient's
primary oncologist.

- Patient is being treated for one of the above high-risk diseases with <3 months until
end-of-therapy disease evaluation, OR

- Patient's disease has relapsed, progressed, or not responded to therapy, as documented
in the EMR and/or confirmed by the child's pediatric oncologist.

Inclusion Criteria - Non-Primary Oncologist Care Team Members, Patient's Extended Family
Member, or Friend of the Family:

- Patient's primary oncologist is enrolled on the study.

- Patient's caregiver is enrolled on the study.

- Patient's caregiver has given verbal permission for non-primary oncologist clinical
members of the patient's care team, the extended family member, or friend of the
family to be present during the conversation between the patient's primary oncologist
and the patient's caregiver.

- any non-primary oncologist members of the patient's clinical care team, the extended
family members, or friends of the family (all age 18+ years) have all given verbal
consent to be audio-recorded prior to the beginning of the conversation, in case they
speak during the conversation between patient's primary oncologist and the patient's
caregiver.

Exclusion Criteria:

- Implicitly stated in above inclusion criteria.

- Inability or unwillingness of potential research participant or legal
guardian/representative to give informed consent.