Pediatric Palliative Care Health Care Initiative

An increasing number of children are living with life-limiting conditions and complex chronic conditions, both of which require ongoing medical support and attention. Community-based palliative care teams provide many of the services needed for these patients, but a variety of challenges – limited resources in rural areas, shortages of qualified professionals, families with limited transportation options – can cause gaps in a child’s access to needed services. Telehealth has the potential to bridge many of these gaps by bringing care directly to the child, wherever he or she is, but there is very little data on telehealth for pediatric palliative care.

METHODS 

Patients of TrinityKids Care received the option for two to three months of trial telehealth visit access via iPad as a supplement to conventional care. The TrinityKids Care pediatric team was thoroughly trained in telehealth-delivered care, and both the team and participating families rehearsed several “dry runs” of a telehealth visit leading up to the trial period. Members of the pediatric team collected data to track telehealth’s impact on patient health as well as costs.

The project acted as both a pilot research project and as a quality improvement initiative, exploring how telehealth-delivered services improve pediatric palliative care while gaining practical data to develop more rigorous future research designs. Participants in the project viewed telehealth favorably, particularly noting that the ability to receive services in the home eased the family’s burdens. Findings have set the stage for additional research on the effectiveness and economic impact of telehealth-delivered pediatric palliative care.