Alfred I. duPont Hospital for Children Archives

2018

Young Investigator

Corinna Schultz

Wilmington, DE

Caregiver Use of an On-line Patient Portal in Pediatric Oncology

Caregiver Use of an on-line Patient Portal in Pediatric Oncology

Management of pediatric cancer entails frequent laboratory and radiology testing to monitor response to treatment, side effects, and possible relapse of disease. With the increasing availability of on-line patient portals, caregivers (parents/guardians) have direct access to their child’s medical record, including test results. Caregiver access to this information may ultimately affect disease management and the child’s outcomes. Despite this, we know little about how caregivers of children with cancer utilize such portals or the effect this has.

This research examines the uptake, long-term use, and possible benefits of patient portal use among caregivers of children with cancer. The specific aims of this project are to:

• Describe the socio-demographic and clinical characteristics of children with cancer whose caregivers utilize an on-line patient portal versus those who do not.
• Identify patterns of portal use and how patterns are associated with engagement in treatment.

By describing the socio-demographic and clinical characteristics of children with cancer whose caregivers utilize a portal we will provide insight into the utility of portals within this population. This is the first step in understanding its effect on childhood cancer outcomes.

Children with special health care needs, including children with cancer, are a unique but growing population. Caregiver access to clinical information through portals is intended to encourage engagement in treatment and ultimately to influence disease management and the child and family’s outcomes. There have been no studies investigating the interplay between portal use, family engagement, and outcomes in this population. With this clarity, we can inform the use of health information technologies to partner with and engage caregivers while mitigating any ill effects (ie. Increased anxiety, increased misunderstanding). This is the first step in linking portal use to disease management and outcomes in children with cancer.