Child and family perceptions of satisfaction with neutropenia management in pediatric acute myeloid leukemia.


Journal

Pediatric blood & cancer
ISSN: 1545-5017
Titre abrégé: Pediatr Blood Cancer
Pays: United States
ID NLM: 101186624

Informations de publication

Date de publication:
Aug 2023
Historique:
revised: 26 04 2023
received: 20 01 2023
accepted: 27 04 2023
medline: 26 6 2023
pubmed: 17 5 2023
entrez: 17 5 2023
Statut: ppublish

Résumé

Chemotherapy for pediatric acute myeloid leukemia (AML) is very intensive and many, but not all centers, require extended hospitalization until neutrophil recovery. Child and family preferences, beliefs, and experiences around hospitalization have not been systematically assessed. We recruited children with AML and their parents from nine pediatric cancer centers across the United States for a qualitative interview about their experiences of neutropenia management. Interviews were analyzed using a conventional content analysis approach. Of 116 eligible individuals, 86 (74.1%) agreed to participate. Interviews were conducted with 32 children and 54 parents from 57 families. Of these 57 families, 39 were cared for as inpatients and 18 were managed as outpatients. A very high proportion of respondents in both groups reported satisfaction with the discharge management strategy recommended by the treating institution: 86% (57 individuals) of respondents who experienced inpatient management and 85% (17 individuals) of respondents who experienced outpatient management expressed satisfaction. Respondent perceptions associated with satisfaction related to safety (access to emergency interventions, infection risk, close monitoring) and psychosocial concerns (family separation, low morale, social support). Respondents believed it could not be assumed that all children would have the same experience due to varied life circumstances. Children with AML and their parents express a very high degree of satisfaction with the discharge strategy recommended by their treating institution. Respondents saw a nuanced tradeoff between patient safety and psychosocial concerns that was mediated by a child's life circumstances.

Identifiants

pubmed: 37194639
doi: 10.1002/pbc.30420
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

e30420

Subventions

Organisme : Patient Centered Outcomes Research Institute
ID : CER-1409-22827

Informations de copyright

© 2023 Wiley Periodicals LLC.

Références

Castagnola E, Fontana V, Caviglia I, et al. A prospective study on the epidemiology of febrile episodes during chemotherapy-induced neutropenia in children with cancer or after hemopoietic stem cell transplantation. Clin Infect Dis. 2007;45(10):1296-1304.
Feusner JH, Hastings CA. Infections in children with acute myelogenous leukemia. Concepts of management and prevention. J Pediatr Hematol Oncol. 1995;17(3):234-247.
Hakim H, Flynn PM, Knapp KM, Srivastava DK, Gaur AH. Etiology and clinical course of febrile neutropenia in children with cancer. J Pediatr Hematol Oncol. 2009;31(9):623-629.
Lehrnbecher T, Varwig D, Kaiser J, Reinhardt D, Klingebiel T, Creutzig U. Infectious complications in pediatric acute myeloid leukemia: analysis of the prospective multi-institutional clinical trial AML-BFM 93. Leukemia. 2004;18(1):72-77.
Maloney KW, Giller R, Hunger SP. Recent advances in the understanding and treatment of pediatric leukemias. Adv Pediatr. 2012;59(1):329-358.
Riley LC, Hann IM, Wheatley K, Stevens RF. Treatment-related deaths during induction and first remission of acute myeloid leukaemia in children treated on the Tenth Medical Research Council acute myeloid leukaemia trial (MRC AML10). The MCR Childhood Leukaemia Working Party. Br J Haematol. 1999;106(2):436-444.
Lehrnbecher T, Phillips R, Alexander S, et al. Guideline for the management of fever and neutropenia in children with cancer and/or undergoing hematopoietic stem-cell transplantation. J Clin Oncol. 2012;30(35):4427-4438.
Lehrnbecher T, Ethier MC, Zaoutis T, et al. International variations in infection supportive care practices for paediatric patients with acute myeloid leukaemia. Br J Haematol. 2009;147(1):125-128.
Sung L, Aplenc R, Alonzo TA, Gerbing RB, Lehrnbecher T, Gamis AS. Effectiveness of supportive care measures to reduce infections in pediatric AML: a report from the Children's Oncology Group. Blood. 2013;121(18):3573-3577.
Morgan JE, Cleminson J, Stewart LA, Phillips RS, Atkin K. Meta-ethnography of experiences of early discharge, with a focus on paediatric febrile neutropenia. Support Care Cancer. 2018;26(4):1039-1050.
Cheng S, Teuffel O, Ethier MC, et al. Health-related quality of life anticipated with different management strategies for paediatric febrile neutropaenia. Br J Cancer. 2011;105(5):606-611.
Sung L, Feldman BM, Schwamborn G, et al. Inpatient versus outpatient management of low-risk pediatric febrile neutropenia: measuring parents' and healthcare professionals' preferences. J Clin Oncol. 2004;22(19):3922-3929.
Diorio C, Martino J, Boydell KM, et al. Parental perspectives on inpatient versus outpatient management of pediatric febrile neutropenia. J Pediatr Oncol Nurs. 2011;28(6):355-362.
Getz KD, Szymczak JE, Li Y, et al. Medical outcomes, quality of life, and family perceptions for outpatient vs inpatient neutropenia management after chemotherapy for pediatric acute myeloid leukemia. JAMA Netw Open. 2021;4(10):e2128385.
Szymczak JE, Getz KD, Madding R, et al. Identifying patient- and family-centered outcomes relevant to inpatient versus at-home management of neutropenia in children with acute myeloid leukemia. Pediatr Blood Cancer. 2018;65(4):e26927.
Guest G, Bruce A, Johnson L. How many interviews are enough? An experiment with data saturation and variability. Field Methods. 2006;18(1):59.
Kerr C, Nixon A, Wild D. Assessing and demonstrating data saturation in qualitative inquiry supporting patient-reported outcomes research. Expert Rev Pharmacoecon Outcomes Res. 2010;10(3):269-281.
De Los Reyes A. Strategic objectives for improving understanding of informant discrepancies in developmental psychopathology research. Dev Psychopathol. 2013;25(3):669-682.
Deterding NM, Waters MC. Flexible coding of in-depth interviews: a twenty-first-century approach. Sociol Methods Res. 2021;50(2):708-739.
Kamboj M, Sepkowitz KA. Nosocomial infections in patients with cancer. Lancet Oncol. 2009;10(6):589-597.
Pelletier W, Bona K. Assessment of financial burden as a standard of care in pediatric oncology. Pediatr Blood Cancer. 2015;62:S619-S631.
Rosenberg AR, Bradford MC, McCauley E, et al. Promoting resilience in adolescents and young adults with cancer: results from the PRISM randomized controlled trial. Cancer. 2018;124(19):3909-3917.
Butler M, McCreedy E, Schwer N, et al. AHRQ comparative effectiveness reviews. In: Improving Cultural Competence to Reduce Health Disparities. Agency for Healthcare Research and Quality (US); 2016.
Nafradi L, Nakamoto K, Schulz PJ. Is patient empowerment the key to promote adherence? A systematic review of the relationship between self-efficacy, health locus of control and medication adherence. PLoS One. 2017;12(10):e0186458.
Pierce MC, Kaczor K, Thompson R. Bringing back the social history. Pediatr Clin North Am. 2014;61(5):889-905.

Auteurs

Julia E Szymczak (JE)

Division of Epidemiology, Department of Internal Medicine, University of Utah School of Medicine, Salt Lake City, Utah, USA.

Kelly D Getz (KD)

Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania, USA.
Division of Oncology, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Clinical Futures, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.

Rachel Madding (R)

Division of Oncology, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Clinical Futures, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.

Sydney Shuster (S)

Clinical Futures, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Division of Infectious Diseases, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.

Catherine Aftandilian (C)

Division of Pediatric Hematology/Oncology, Stanford University School of Medicine and Lucile Packard Children's Hospital, Palo Alto, California, USA.

Staci D Arnold (SD)

Department of Pediatrics, Emory University, Atlanta, Georgia, USA.

Anderson B Collier (AB)

Department of Pediatrics, Division of Hematology/Oncology, University of Mississippi Medical Center, Jackson, Mississippi, USA.

Maria M Gramatges (MM)

Texas Children's Cancer Center, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA.

Meret Henry (M)

Division of Hematology/Oncology, Children's Hospital of Michigan, Wayne State University, Detroit, Michigan, USA.

Nobuko Hijiya (N)

Division of Pediatric Hematology, Oncology, and Stem Cell Transplant, Department of Pediatrics, Columbia University Irving Medical Center, New York, New York, USA.

Amir Mian (A)

Department of Pediatric Hematology-Oncology, Arkansas Children's Hospital, Little Rock, Arkansas, USA.

Elizabeth Raetz (E)

Stephen D. Hassenfeld Children's Center for Cancer and Blood Disorders, New York, New York, USA.

Brian T Fisher (BT)

Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania, USA.
Clinical Futures, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Division of Infectious Diseases, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.

Richard Aplenc (R)

Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania, USA.
Division of Oncology, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Clinical Futures, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.

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