Patient/Family Education for Newly Diagnosed Pediatric Oncology Patients: Consensus Recommendations from a Children's Oncology Group Expert Panel

• Type of Material: Article
• Authors: Wendy Landier, University of Alabama Birmingham; JoAnn Ahern, Western Connecticut Health Network; Lamia P. Barakat, Children’s Hospital of Philadelphia; Smita Bhatia, University of Alabama Birmingham; Kristin M. Bingen, Medical College of Wisconsin; Patricia G. Bondurant, Transform Healthcare Consulting; Susan L. Cohn, University of Chicago; Sarah K. Dobrozsi, Medical College of Wisconsin; Maureen Haugen, Lurie Children’s Hospital of Chicago; Ruth Anne Herring, Cook Children’s Medical Center; Mary C. Hooke, University of Minnesota; Melissa Martin, Children’s Healthcare of Atlanta; Kathryn Murphy, Children’s Hospital of Wisconsin; Amy R. Newman, Medical College of Wisconsin; Cheryl C. Rodgers, Duke University; Kathleen S. Ruccione, Azusa Pacific University; Jeneane Sullivan, Children’s Hospital of Philadelphia; Marianne Weiss, Marquette University; Janice Withycombe, Emory University; Lise Yasui, Children’s Oncology Group; Marilyn Hockenberry, Duke University
• Language: English
• Date: 2016-11
• Publisher: SAGE Publications (UK and US)
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2016 by Association of Pediatric Hematology/Oncology Nurses.
• Final Published Version (URL): http://dx.doi.org/10.1177/1043454216655983
• Title of Journal or Parent Work: Journal of Pediatric Oncology Nursing
• ISSN: 1043-4542
• Volume: 33
• Issue: 6
• Start Page: 422
• End Page: 431
• Grant/Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Supported by the National Cancer Institute (R13CA196165, PIs—Landier and Hockenberry) and by the National Cancer Institute/National Clinical Trials Network Group Operations Center Grant (U10CA180886, PI—Adamson).
• Keywords: NATIONAL-SURVEY; Oncology; BLUEPRINT; new diagnosis; CHILDHOOD-CANCER; MANAGEMENT; Children's Oncology Group; childhood cancer; Science & Technology; patient; family education; Nursing; Life Sciences & Biomedicine
• Research Categories: Health Sciences, Education; Health Sciences, Oncology

Abstract

There is a paucity of data to support evidence-based practices in the provision of patient/family education in the context of a new childhood cancer diagnosis. Since the majority of children with cancer are treated on pediatric oncology clinical trials, lack of effective patient/family education has the potential to negatively affect both patient and clinical trial outcomes. The Children’s Oncology Group Nursing Discipline convened an interprofessional expert panel from within and beyond pediatric oncology to review available and emerging evidence and develop expert consensus recommendations regarding harmonization of patient/family education practices for newly diagnosed pediatric oncology patients across institutions. Five broad principles, with associated recommendations, were identified by the panel, including recognition that (1) in pediatric oncology, patient/family education is family-centered; (2) a diagnosis of childhood cancer is overwhelming and the family needs time to process the diagnosis and develop a plan for managing ongoing life demands before they can successfully learn to care for the child; (3) patient/family education should be an interprofessional endeavor with 3 key areas of focus: (a) diagnosis/treatment, (b) psychosocial coping, and (c) care of the child; (4) patient/family education should occur across the continuum of care; and (5) a supportive environment is necessary to optimize learning. Dissemination and implementation of these recommendations will set the stage for future studies that aim to develop evidence to inform best practices, and ultimately to establish the standard of care for effective patient/family education in pediatric oncology.