Development and Implementation of a Wheelchair Outcomes Registry

Area of Science:

• Rehabilitation Engineering
• Clinical Informatics
• Patient-Reported Outcomes

Background:

• Developing robust patient registries is crucial for advancing clinical quality assurance and research in assistive technology.
• Wheeled mobility and seating (WMS) devices significantly impact the daily lives and participation of individuals with mobility impairments.
• Standardized data collection methods are needed to facilitate large-scale analysis of WMS interventions.

Purpose of the Study:

• To describe the development and implementation of a patient registry for wheeled mobility and seating (WMS) device interventions.
• To establish a framework for accumulating large datasets for clinical quality assurance and research.
• To enable scientific evaluation of WMS device effectiveness across diverse patient populations and circumstances.

Main Methods:

• Utilized accepted guidelines for registry development, centered on the Functional Mobility Assessment (FMA) questionnaire and a uniform dataset (UDS).
• Administered FMA and UDS at baseline during WMS device assessments and periodically through remote follow-up.
• Included any patient with a mobility impairment requiring a WMS device, encompassing manual wheelchairs, power wheelchairs, scooters, seating, and accessories.

Main Results:

• Over 1500 complete baseline FMA and UDS cases and more than 600 follow-up datasets have been collected from 45 nationwide providers.
• The FMA is a validated 10-item patient-centered measure assessing satisfaction with daily living activities.
• The UDS captures key variables including demographics, diagnosis, device type, health, participation, and environmental factors.

Conclusions:

• A feasible patient registry for WMS devices has been successfully established in a clinical setting.
• The registry provides a foundation for collecting substantial data to enhance the scientific evaluation of WMS device efficacy.
• Future analyses can determine optimal WMS device selection for specific patient profiles to promote health and participation.