Home Away From Home - Quality of Life Surveys

This is a prospective observational cohort study, where the primary objective of this study
is to compare patient and caregiver quality of life and other patient-centered outcomes for
inpatient versus outpatient management of neutropenia in children with AML or MDS receiving
standard intensive AML frontline chemotherapy.

Local study investigators (pediatric oncologists and study coordinators) at each of the
fifteen participating pediatric institutions will communicate on a weekly basis with their
inpatient leukemia service to identify AML or MDS patients potentially eligible for study
enrollment. Once identified, study personnel will review each patient for study eligibility
criteria. Three visits with the patient and their caregivers will occur: a screening visit,
initial survey visit, and a follow-up visit.

Screening Visit: The eligibility criteria for participation will be confirmed prior to
approaching for consent. Eligible patients interested in the study will be approached for
consent at any time from AML/MDS diagnosis through last day of chemotherapy in the treatment
course under study. In some cases, the patient's caregivers may not be present in the
hospital to provide consent. In these cases, study personnel will obtain verbal consent from
the caregivers and child assent (if appropriate).

Visit 1 will occur prior to the last day of chemotherapy administration in the course. This
visit will include:

- 2 Brief demographic surveys to capture covariates unavailable in the medical record

- Baseline health-related quality of life (HRQOL) surveys

- A baseline financial toxicity assessment

Surveys will be administered via paper or a smart device and will last a total of 15-30
minutes per respondent. In the case that the child is 5 years of age or older, the child
self-report and parent proxy-report scales will be separately administered to the child and
caregiver, respectively. If the child is under 5 years of age, only the parent-proxy version
will be administered. Only the caregiver completes the baseline financial toxicity
assessment. We will provide a $25 gift card to each child-parent dyad upon completion of the
baseline surveys

Visit 2 will occur within the period after absolute neutrophil count recovery and ideally
prior to the start of the subsequent course of chemotherapy, but no later than the last day
of chemotherapy in that next treatment course. This visit will include:

- Follow-up HRQOL surveys

- Patient-centered outcome survey developed previously from qualitative interviews of AML
patients and their caregivers

- A follow-up financial toxicity assessment

Surveys will be administered via paper or a smart device and will last a total of 15-30
minutes per respondent. In the case that the child is 5 years of age or older, the child
self-report and parent proxy-report scales will be administered to the child and caregiver,
respectively. If the child is under 5 years of age, only the parent-proxy version will be
administered. The follow-up financial toxicity assessment and the patient-centered outcome
survey are completed by the caregiver only. We will provide a $25 gift card to each
child-parent dyad upon completion of the follow-up surveys.

Inclusion Criteria:

1. Participants will be enrolled as patient-caregiver dyads. The patient must be:

- Less than 19 years of age at diagnosis.

- Patient is English or Spanish literate.

- Receiving chemotherapy for AML between June 1, 2016 and December 31, 2019.

2. Participants will be enrolled as patient-caregiver dyads. The caregiver must be:

- English or Spanish literate.

- The legal guardian of a patient receiving chemotherapy for AML between June 1,
2016 and December 31, 2019.

3. Parental/caregiver informed consent and, if appropriate, child assent.

Exclusion Criteria:

1. Patients being treated for relapsed AML

2. Patients with Acute Promyelocytic Leukemia (APML)

3. Patients undergoing stem cell transplant (SCT)

4. Patients receiving reduced intensity frontline chemotherapy