Medical Treatment Decision Making Using Adaptive Conjoint Analysis

Data for this observational study will be collected first at the time the participants enroll
in the study. If the participant agrees to be re-contacted in the event of disease relapse or
recurrent cancer, follow-up data will be collected at a second time point up to five years
after enrollment. This second follow-up time point is optional.

Participants will complete two short questionnaires and a guided survey on a laptop computer.
AYA patients and parents will participate in an interviewer-led interview session. The
surveys are the Herth Hope Index (HHI) to assess hope in adults in clinical settings, and the
Decision Making Preference Questionnaire (DMPQ) to identify factors that parents believe
influence their role in treatment decision making. The guided survey presents a hypothetical
situation outlining different treatment options at the time of recurrent or progressive
disease. Participants will be asked to answer questions related to type of treatment,
location of treatment, hospital of treatment, route of treatment, symptoms or side effects
from treatment, quality of life, frequency of clinic visits, chance of being hospitalized,
chance of cure, and survival length of time.

Medical data including cancer diagnosis, date of diagnosis, duration of time on treatment,
and serious side effects and complications of treatment will be collected on AYA patients.

Data will be analyzed by group: (1) adolescent and young adult patients, (2) parents, or (3)
health-care providers.

Inclusion Criteria:

- Participants must be English speaking.

- There are three main participant subsets for the first time point of the study:

- AYA patients (aged 13-30) with an oncological diagnosis who are currently
receiving active treatment at St. Jude Children's Research Hospital that includes
at least chemotherapy, and have been doing so for at least three months.

- Parents of a patient (<18) who meets the above criteria. If available, parents of
a young adult patient (≥18) who meets the above criteria will be invited to
participate.

- HCPs of patients at St. Jude with at least 1 year of experience taking care of
AYA oncology patients. HCPs must have an MD or DO degree and be an attending
physician or clinical fellow at St. Jude Children's Research Hospital.

- Patient participants must have an oncological diagnosis that confers less than a 75%
overall survival based on consultation with an oncologist.

- Participants who agree to be re-contacted up to five years later, to consider taking
part in the T2 time point, must have participated in the T1 time point and the patient
participant must have relapsed or recurrent disease at the time of re- contact, as
documented in the medical record.

Exclusion Criteria:

- Patients with relapsed or recurrent disease at the time of initial enrollment.

- Patients who only receive local radiation for treatment without adjunctive
chemotherapy.

- Patients or parents who are unable to complete the study due to ill health, cognitive
compromise, or concern about potential distress based on consultation with a
psychosocial provider.