Home Away From Home - Quality of Life Surveys

NCT ID: NCT02777021

Last Updated: 2019-12-23

Study Results

Results available

Outcome measurements, participant flow, baseline characteristics, and adverse events have been published for this study.

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Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

154 participants

Study Classification

OBSERVATIONAL

Study Start Date

2016-09-30

Study Completion Date

2019-07-18

Brief Summary

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Treatment for pediatric acute myeloid leukemia (AML) involves intensive chemotherapy regimens that result in periods of profound neutropenia leaving patients susceptible to severe infectious complications. Infectious complications are the leading cause of treatment related mortality among AML patients, but there are little clinical data to inform whether management of neutropenia post AML chemotherapy should occur in an outpatient or inpatient setting. Further, no studies have been conducted that assess the impact of neutropenia management strategy on the quality of life of pediatric patients with AML and their caregivers.

Detailed Description

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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.

Conditions

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Pediatric Acute Myeloid Leukemia

Keywords

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Pediatric Acute Myeloid Leukemia Quality of Life Neutropenia Management Patient Centered Outcomes Chemotherapy

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Early Discharge Patients

Patients receiving or having received chemotherapy for AML who are discharged to outpatient management within 3 days after chemotherapy completion. Subjects will complete a health related quality of life (HRQOL) survey at baseline and again at the start of the next treatment course. Survey questions will collect information such as patient race and educational level.

No interventions assigned to this group

Inpatient Management Patients

Patients receiving or having received chemotherapy for AML who remain in the hospital more than 3 days after chemotherapy completion. Subjects will complete a health related quality of life (HRQOL) survey at baseline and again at the start of the next treatment course. Survey questions will collect information such as patient race and educational level.

No interventions assigned to this group

Eligibility Criteria

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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
Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Children's Healthcare of Atlanta

OTHER

Sponsor Role collaborator

C.S. Mott Children's Hospital

OTHER

Sponsor Role collaborator

Ann & Robert H Lurie Children's Hospital of Chicago

OTHER

Sponsor Role collaborator

Arkansas Children's Hospital Research Institute

OTHER

Sponsor Role collaborator

Children's Medical Center Dallas

OTHER

Sponsor Role collaborator

Baylor College of Medicine

OTHER

Sponsor Role collaborator

Primary Children's Hospital

OTHER

Sponsor Role collaborator

Children's Hospital of Michigan

OTHER

Sponsor Role collaborator

Lucile Packard Children's Hospital

OTHER

Sponsor Role collaborator

St. Jude Children's Research Hospital

OTHER

Sponsor Role collaborator

Seattle Children's Hospital

OTHER

Sponsor Role collaborator

Patient-Centered Outcomes Research Institute

OTHER

Sponsor Role collaborator

Alfred I. duPont Hospital for Children

OTHER

Sponsor Role collaborator

Children's Hospital Colorado

OTHER

Sponsor Role collaborator

Dana-Farber Cancer Institute

OTHER

Sponsor Role collaborator

Children's Hospital of Philadelphia

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Richard Aplenc, MD, PhD

Role: PRINCIPAL_INVESTIGATOR

Children's Hospital of Philadelphia

Locations

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Arkansas Children's Hospital

Little Rock, Arkansas, United States

Site Status

Lucile Packard Children's Hospital

Palo Alto, California, United States

Site Status

Children's Hospital of Colorado

Aurora, Colorado, United States

Site Status

Nemours/Alfred I DuPont Hospital for Children

Wilmington, Delaware, United States

Site Status

Children's Healthcare of Atlanta

Atlanta, Georgia, United States

Site Status

Ann & Robert H Lurie Children's Hospital of Chicago

Chicago, Illinois, United States

Site Status

Dana-Farber Cancer Institute/Boston Children's Hospital

Boston, Massachusetts, United States

Site Status

C.S. Mott Children's Hospital

Ann Arbor, Michigan, United States

Site Status

Children's Hospital of Michigan

Detroit, Michigan, United States

Site Status

Children's Hospital of Philadelphia

Philadelphia, Pennsylvania, United States

Site Status

St. Jude Children's Research Hospital

Memphis, Tennessee, United States

Site Status

Children's Medical Center of Dallas

Dallas, Texas, United States

Site Status

Texas Children's Hospital

Houston, Texas, United States

Site Status

Primary Children's Hospital

Salt Lake City, Utah, United States

Site Status

Seattle Children's Hospital

Seattle, Washington, United States

Site Status

Countries

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United States

Provided Documents

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Document Type: Study Protocol and Statistical Analysis Plan

View Document

Other Identifiers

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15-012103

Identifier Type: -

Identifier Source: org_study_id