Educating Families of Children Newly Diagnosed With Cancer

Abstract

Parents/caregivers require specialized education in order to care for their child with a newly diagnosed cancer. Currently, no evidence-based guidelines exist to identify content essential for inclusion in patient/family education prior to a child's initial discharge home; this study used Delphi methodology to obtain multidisciplinary consensus regarding essential content amongst pediatric oncology experts from the Children's Oncology Group. Three questionnaire rounds were employed to identify essential content, evaluate the importance of the educational topics identified, and gain expert consensus regarding the final ranking of topics identified and whether or not each topic was considered mandatory for inclusion in education for newly diagnosed patients. Disease-specific topics were also identified for patients with leukemia, solid tumors, and central nervous system tumors. The results of this study provide, for the first time, multidisciplinary expert consensus regarding key content essential for inclusion in discharge education for newly diagnosed pediatric oncology patients.

Keywords: Children’s Oncology Group; Delphi study; childhood cancer; educating families.

Figure 1.

Proportion of expert panel members that considered each topic mandatory for inclusion in education for all newly diagnosed pediatric oncology patients prior to the initial hospital discharge.

Figure 2.

Proportion of expert panel members that considered additional topics mandatory for inclusion in education for newly diagnosed pediatric oncology patients prior to the initial hospital discharge by diagnostic group: (A) Leukemia/lymphoma; (B) solid tumors; (C) central nervous system (CNS) tumors. G-CSF, granulocyte colony-stimulating factor; ICP, intracranial pressure.