Education Milestones for Newly Diagnosed Pediatric, Adolescent, and Young Adult Cancer Patients: A Quality Improvement Initiative

Abstract

The diagnosis of cancer in a child, adolescent, or young adult is an emotionally overwhelming time. To improve the quality of education and support provided to patients and caregivers with a new cancer diagnosis, we executed a quality improvement initiative to (a) define key education milestones for the delivery of essential education during the first 2 months following diagnosis and (b) to define role accountability within the multidisciplinary team for delivery of content and execution of tasks. To develop education milestones, we (a) identified educational content from review of the literature, (b) determined the sequence of content delivery through qualitative interviews with patients and caregivers, and (c) developed education milestones by evaluation of existing workflows. To develop task lists, we (a) determined which multidisciplinary team member was best suited to deliver specific content and (b) defined discrete tasks required to execute education milestones. Key content topics and preferred sequence are as follows: Emotional Adjustment to Diagnosis, When and How to Call the Doctor, Medication Management, Practical Needs, Line Care, and Access to Nontherapeutic Clinical Trials. Eight education milestones were defined across the initial 2 months following cancer diagnosis. The education milestones are paired with task lists. The education milestones and task lists guide the execution of complex education across a multidisciplinary service line in an emotionally challenging time. Early information focuses on essential content, role responsibility is clearly defined, and psychosocial support services are purposefully and iteratively integrated into care during the initial weeks following a cancer diagnosis.