Identifying patient‐ and family‐centered outcomes relevant to inpatient versus at‐home management of neutropenia in children with acute myeloid leukemia期刊界 All Journals 搜尽天下杂志传播学术成果专业期刊搜索期刊信息化学术搜索

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

Authors:	Julia E. Szymczak Kelly D. Getz Rachel Madding Brian Fisher Elizabeth Raetz Nobuko Hijiya Maria M. Gramatges Meret Henry Amir Mian Staci D. Arnold Catherine Aftandilian Anderson B. Collier Richard Aplenc

Affiliation:	1. Department of Biostatistics, Epidemiology and Informatics, University of Pennsylvania, Perelman School of Medicine, Philadelphia, Pennsylvania;2. Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania, Perelman School of Medicine, Philadelphia, Pennsylvania;3. Division of Oncology, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania;4. Center for Pediatric Clinical Effectiveness, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania;5. Division of Infectious Diseases, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania;6. Department of Pediatrics and Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah;7. Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, Illinois;8. Division of Pediatric Hematology Oncology, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois;9. Department of Pediatrics, Section of Hematology‐Oncology, Baylor College of Medicine, Houston, Texas;10. Division of Hematology/Oncology, Children's Hospital of Michigan, Wayne State University, Detroit, Michigan;11. Department of Pediatric Hematology‐Oncology, College of Medicine, Arkansas Children's Hospital, University of Arkansas Medical Sciences, Little Rock, Arkansas;12. Department of Pediatrics, Emory University, Atlanta, Georgia;13. Division of Pediatric Hematology/Oncology, Stanford University School of Medicine and Lucile Packard Children's Hospital, Palo Alto, California;14. Division of Hematology/Oncology, Department of Pediatrics, University of Mississippi Medical Center, Jackson, Mississippi

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.

Keywords:	acute myeloid leukemia neutropenia patient‐reported outcomes qualitative methodology

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