title: Patient/Family Education for Newly Diagnosed Pediatric Oncology Patients.
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.
authors.affiliation: 1 University of Alabama at Birmingham, AL, USA.
authors.forename: Wendy
authors.initials: W
authors.lastname: Landier
authors.affiliation: 2 Western Connecticut Health Network, Danbury, CT, USA.
authors.forename: JoAnn
authors.initials: J
authors.lastname: Ahern
authors.affiliation: 3 Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Lamia P
authors.initials: LP
authors.lastname: Barakat
authors.affiliation: 1 University of Alabama at Birmingham, AL, USA.
authors.forename: Smita
authors.initials: S
authors.lastname: Bhatia
authors.affiliation: 4 Medical College of Wisconsin, Milwaukee, WI, USA.
authors.forename: Kristin M
authors.initials: KM
authors.lastname: Bingen
authors.affiliation: 5 Transform Healthcare Consulting, LLC, Cincinnati, OH, USA.
authors.forename: Patricia G
authors.initials: PG
authors.lastname: Bondurant
authors.affiliation: 6 University of Chicago Comprehensive Cancer Center, Chicago, IL, USA.
authors.forename: Susan L
authors.initials: SL
authors.lastname: Cohn
authors.affiliation: 4 Medical College of Wisconsin, Milwaukee, WI, USA.
authors.forename: Sarah K
authors.initials: SK
authors.lastname: Dobrozsi
authors.affiliation: 7 Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
authors.forename: Maureen
authors.initials: M
authors.lastname: Haugen
authors.affiliation: 8 Cook Children's Medical Center, Fort Worth, TX, USA.
authors.forename: Ruth Anne
authors.initials: RA
authors.lastname: Herring
authors.affiliation: 9 University of Minnesota School of Nursing, Minneapolis, MN, USA.
authors.forename: Mary C
authors.initials: MC
authors.lastname: Hooke
authors.affiliation: 10 Children's Healthcare of Atlanta, Atlanta, GA, USA.
authors.forename: Melissa
authors.initials: M
authors.lastname: Martin
authors.affiliation: 11 Children's Hospital of Wisconsin, Milwaukee, WI, USA.
authors.forename: Kathryn
authors.initials: K
authors.lastname: Murphy
authors.affiliation: 4 Medical College of Wisconsin, Milwaukee, WI, USA.
authors.forename: Amy R
authors.initials: AR
authors.lastname: Newman
authors.affiliation: 12 Duke University School of Nursing, Durham, NC, USA.
authors.forename: Cheryl C
authors.initials: CC
authors.lastname: Rodgers
authors.affiliation: 13 Azusa Pacific University School of Nursing, Azusa, CA, USA.
authors.forename: Kathleen S
authors.initials: KS
authors.lastname: Ruccione
authors.affiliation: 3 Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Jeneane
authors.initials: J
authors.lastname: Sullivan
authors.affiliation: 14 Marquette University College of Nursing, Milwaukee, WI, USA.
authors.forename: Marianne
authors.initials: M
authors.lastname: Weiss
authors.affiliation: 15 Emory University School of Nursing, Atlanta, GA, USA.
authors.forename: Janice
authors.initials: J
authors.lastname: Withycombe
authors.affiliation: 16 Children's Oncology Group, Monrovia, CA, USA.
authors.forename: Lise
authors.initials: L
authors.lastname: Yasui
authors.affiliation: 12 Duke University School of Nursing, Durham, NC, USA.
authors.forename: Marilyn
authors.initials: M
authors.lastname: Hockenberry
mesh_terms: D002648:Child; D002675:Child, Preschool; D005260:Female; D006266:Health Education / Q000379:methods*; D006801:Humans; D008297:Male; D008495:Medical Oncology / Q000379:methods; D009369:Neoplasms / Q000451:nursing* / Q000523:psychology; D010287:Parent-Child Relations; D010290:Parents / Q000193:education*; D010372:Pediatrics / Q000379:methods; D017410:Practice Guidelines as Topic; D011368:Professional-Family Relations
keywords: Children’s Oncology Group; childhood cancer; new diagnosis; patient/family education