Patient/Family Education in Pediatric Oncology: State of the Science Symposium

Children'S Hosp Of Philadelphia, Philadelphia PA

Investigators

Linked publications & trials

Abstract

? DESCRIPTION (provided by applicant): The majority of the over 15,000 children and adolescents diagnosed with cancer in the United States each year are treated on Children's Oncology Group (COG) clinical trials at over 220 leading universities, cancer centers, and children's hospitals. The COG Nursing Discipline consists of over 2,000 registered nurses representing all COG sites. Patient/family education is a core responsibility of pediatric oncology nurses, and COG nurses assume a key role in the delivery of this education for newly diagnosed patients enrolled on COG clinical trials. Parents/caregivers of these newly diagnosed patients require specialized education in order to provide ongoing care for these children at home. Lack of adequate patient/family education has the potential to significantly influence trial outcomes. However, a paucity of research to date has aimed to determine the essential informational content, the quality of that content, or the efficacy of the methods utilized for delivery of essential informational content to parents/caregivers of newly diagnosed pediatric oncology patients. Recognizing this gap, the COG Nursing Discipline is proposing a one-day conference, Patient/Family Education in Pediatric Oncology: State of the Science Symposium to develop recommendations for best practices in patient/family education through expert consensus building. The proposed conference will build on work already in progress within the COG Nursing Discipline, including a report of results from a Delphi panel regarding the key content necessary to adequately prepare parents/caregivers for a safe discharge home following their child's cancer diagnosis, a systematic literature review aimed at identifying available evidence to support effective delivery of patient/family education, a survey across COG institutions addressing current patient/family education practices, and a study of parental perspectives regarding knowledge acquisition following the diagnosis of cancer in a child. Additionally, the conference will bring together experts from pediatric subspecialties beyond oncology who have successfully-executed patient/family education programs (i.e., type 1 diabetes, premature newborns), experts in discharge readiness from pediatric acute care, and key stakeholders/multidisciplinary experts from within pediatric oncology, to facilitate expert consensus-building regarding best practices in patient/family education. This conference will provide a unique opportunity for stimulating dialogue, discussion, and expert consensus-building regarding patient/family education in pediatric oncology. The expert consensus developed at this conference will result in dissemination of best practice recommendations that will lay the groundwork for the development of evidence-based intervention programs aimed at standardizing essential informational content and supporting the effective delivery of patient/family education for newly diagnosed families across the >220 COG institutions. These intervention programs have the potential to increase the uptake of essential information by parents/caregivers, and to facilitate safe and appropriate home care and protocol compliance for children receiving care on COG clinical trials.