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.

Teamwork in prognostic communication: Addressing bottlenecks and barriers

“…One author (SD) previously developed a framework for educational milestones for newly diagnosed patients and caregivers in pediatric oncology. 41 In this framework, the team defined education milestones for families, established role accountability within the team for delivery of information, and integrated a monitoring process to ensure execution of tasks. The milestones include an intentional opportunity to discuss prognosis roughly two months after initiation of cancer treatment.…”

Online information related to childhood cancer and COVID-19 pandemic: a thematic analysis

“…It is known that families of survivors of the disease continue to search for information (46) . Communication with families of children with cancer should provide for more than simply providing information, and it is relevant to have the aim of promoting support in line with values and needs (47) , which determines personalized communication (47) . Thus, websites need to consider more interactive channels with the family, allowing their placement, their voice.…”

An exploratory assessment of pediatric patient and parent needs after implantable cardioverter defibrillator implant

“…Additionally, novel techniques that incorporate technology and means of educating patients may need to be developed or adapted to meet this need. Following initiatives established for other disease groups, such as pediatric oncology, may yield insight as to how pediatric cardiology programs can replicate such efforts . The authors plan to develop and then evaluate educational tools that better meet the needs of these patients.…”

“…The discrepancy between parent and patient reports was also observed by replicate such efforts. 14,15 The authors plan to develop and then evaluate educational tools that better meet the needs of these patients.…”