Symptom Trajectory Approaches to Research

Defining Symptom Trajectories to Inform Risk-Stratified Approaches to Symptom Management in Children With Advanced Cancer

The goal of this observational study is to understand how cancer makes children feel over time. The main things the researchers hope to learn are:

• When and how often do children have different feelings or sickness;
• Why do these feelings happen; and,
• How these feelings change a child's overall health.

Participants will answer simple surveys about their health.

The use of conventional and novel therapeutics to treat children with advanced cancer leads to burdensome physical and psychological symptoms. Advanced cancer is metastatic upon initial diagnosis, relapsed, progressed, or refractory to treatment, resulting in an uncertain and prolonged disease course. Symptom burden and associated suffering are amplified for these children due to disease burden, intense therapy, and often lengthy treatment. Symptom patterns (trajectories) have been identified in children diagnosed with early-stage cancer, but research characterizing symptom patterns over time in the understudied patient population of children with advanced cancer is sparse.

Inclusion Criteria - Children:

• Aged 8-18 years
• Diagnosis of advanced cancer of any type made by the hematology, oncology, or cellular therapy team
• Undergoing cancer treatment or comfort care
• Be English or Spanish literate

Inclusion Criteria - Caregivers:

• Aged >18
• Caregiver of a child diagnosed with advanced cancer
• English or Spanish literate
• Identified as being substantially involved in caring for the child

Exclusion Criteria:

• Any condition that would prevent participants from completing surveys