Using Information Technology to Improve Outcomes for Children Living With Cancer

Using Information Technology to Improve Outcomes for Children Living With Cancer

This proposed study plans to develop and evaluate a patient-oriented, technology-based, symptom monitoring system that reports symptoms experienced by children with cancer to their parents and health care providers.

Cancer is a leading cause of death and disability in children under 15 years of age. Its unrelieved symptoms and side effects of often-aggressive treatments can lead to poor psychosocial functioning and decreased health-related quality of life (HRQOL) for patients and their families. Barriers at the patient, healthcare provider and system levels can contribute to poor symptom management. A technology-based program can minimize these barriers by routinely collecting and interpreting patient-reported outcomes (PROs) and patient/parent contextual data in pediatric oncology ambulatory settings in a manner that is efficient, actionable by physicians, supports engagement of patients and families with their health and care, and improves clinical processes and outcomes. This proposed project will develop and evaluate the effectiveness of such a program: Symptom Monitoring & Systematic Assessment and Reporting System in Young Survivors (SyMon-SAYS). We hypothesize that the SyMon-SAYS intervention will decrease parent-perceived barriers to managing their child's symptoms, decrease patient symptom burden, increase patients' and parents' self-efficacy, and ultimately increase patient HRQOL.

Inclusion Criteria:

Patients

• Have an hematology/oncologic diagnosis (including a brain tumor)
• Be on-treatment or within 6 months post-therapy
• Be between 8 and 17 years old
• English-speaking
• Have sufficient cognitive and motor abilities to complete survey via an electronic device (e.g., smartphone, iPAD, etc.) or computer
• Be able and willing to sign assent forms (for those 12-17 years old).

Parent/legal guardian

• Be a parent (father or mother) or a legal guardian of eligible patients
• Demonstrates sufficient English and/or Spanish ability to understand and sign the informed consent form
• Have sufficient cognitive and motor abilities to complete survey via an electronic device (e.g., smartphone, iPAD, etc) or computer

Exclusion Criteria:

• Patients who cannot understand English sufficiently to sign consent/assent form
• Patients who cannot understand English sufficiently to complete the questionnaires