Identifying patient- and family-centered outcomes relevant to inpatient versus at-home management of neutropenia in children with acute myeloid leukemia

• Type of Material: Article
• Authors: Julia E. Szymczak, University of Pennsylvania; Kelly D. Getz, Childrens Hospital of Philadelphia; Rachel Madding, Childrens Hospital of Philadelphia; Brian Fisher, University of Pennsylvania; Elizabeth Raetz, University of Utah; Nobuko Hijiya, Northwestern University; Maria M. Gramatges, Baylor College of Medicine; Meret Henry, Wayne State University; Amir Mian, University of Arkansas; Staci Arnold, Emory University; Catherine Aftandilian, Stanford University; Anderson B. Collier, University of Mississippi; Richard Aplenc, University of Pennsylvania
• Language: English
• Date: 2018-04-01
• Publisher: Wiley: 12 months
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2017 Wiley Periodicals, Inc.
• Final Published Version (URL): http://dx.doi.org/10.1002/pbc.26927
• Title of Journal or Parent Work: Pediatric Blood and Cancer
• ISSN: 1545-5009
• Volume: 65
• Issue: 4
• Start Page: e26927
• End Page: e26927
• Grant/Funding Information: Patient Centered Outcomes Research Institute, Grant/Award Number: 27300-4258180816
• Keywords: Pediatrics; PARENTS; acute myeloid leukemia; neutropenia; qualitative methodology; CANCER; Life Sciences & Biomedicine; Hematology; patient-reported outcomes; OUTPATIENT MANAGEMENT; PEDIATRIC FEBRILE NEUTROPENIA; Oncology; PREFERENCES; Science & Technology
• Research Categories: Health Sciences, Oncology; Health Sciences, Health Care Management; Health Sciences, Medicine and Surgery

Abstract

Efficacy of therapeutic strategies relative to patient- and family-centered outcomes in pediatric oncology must be assessed. We sought to identify outcomes important to children with acute myeloid leukemia and their families related to inpatient versus at-home management of neutropenia. We conducted qualitative interviews with 32 children ≥8 years old and 54 parents. Analysis revealed the impact of neutropenia management strategy on siblings, parent anxiety, and child sleep quality as being outcomes of concern across respondents. These themes were used to inform the design of a questionnaire that is currently being used in a prospective, multiinstitutional comparative effectiveness trial.