Hospitals and clinicians in the Cerebral Palsy Research Network will be able to track, learn from, and compare outcomes for their patient populations thanks to our selection of standardized patient outcome measures. The CP Research Network has collaborated with Dr. Unni Narayanan, the subject of our recent CP Stories series, at the Hospital for Sick Children in Toronto, Canada, to standardize a validated set of patient-reported outcome measures (PROMs) across the network. Working closely with Nationwide Children’s Hospital in Columbus Ohio and Dr. Narayanan’s PRIORITY-BASED SCALES FOR CHILDREN’S OUTCOMES – RESEARCH & EVALUATION (PSCORE) Program, the CP Research Network has released electronic versions of two PROMs to collate patient information across sites in our network.
The Gait Outcomes Assessment List (GOAL) and the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) will ensure CP families can provide information and communicate their needs to clinicians in patient facing portals like Epic’s MyChart. On a wider scale this submitted data will also help improve treatment more widely in the CP community. Shared decision-making helps balance the input of doctors and experts with the priorities and preferences of patients and their families.
In addition to these benchmarking capabilities, the PROMs allow patients and patient families to identify important goals, which clinicians can take into account as they make decisions about treatments. And the standardization of PROMs holds the promise to improve medical and surgical outcomes across the network.
Dr. Narayanan has been funded by the Canadian Institute for Health Research (CIHR) to study the impact of these tools in improving shared decision making.
Patient families can use these tools today in MyCP – the CP Research Network’s personalized platform for cerebral palsy resources. The CPCHILD and GOAL Questionnaires are available in the MyCP Community Registry that can be taken annually to track a child’s progress across numerous domains like activities of daily living, mobility or participation. Once a family takes the survey, they can download a PDF of their results which includes their important goals, and bring these results to an appointment with their CP focused physician or therapy team.
The CP Research Network will enhance these tools over time to provide summary reports that will include the scores and list of important goals to better support shared decision making. Parents of children under the age of 18 can sign up for MyCP and take these surveys now.