Development and Implementation of a Wheelchair Outcomes Registry.

Objective: To describe the development of a patient registry related to wheeled mobility and seating (WMS) device interventions to accumulate large datasets for clinical quality assurance and research purposes.

Design: Accepted guidelines for registry development were applied and anchored around the Functional Mobility Assessment (FMA) questionnaire and a uniform dataset (UDS).

Setting: The FMA and UDS were developed under a corporate research agreement between clinical researchers and commercial providers. The questionnaires are administered in rehabilitation clinics to patients at the time of assessment for new device interventions (baseline) and readministered by telephone or other remote strategies periodically thereafter (follow-up).

Participants: The FMA and UDS can be administered to any patient with a mobility impairment in need of a WMS device.

Interventions: WMS interventions include manual wheelchairs, power wheelchairs, scooters, seating, and other accessories.

Main Outcome Measures: The FMA is a validated 10-item patient-centered outcome measure that investigates satisfaction in performing common mobility-related activities of daily living. The UDS includes variables related to age, diagnosis, and type of device used, as well as health, participation, and environmental factors.

Results: Currently there are over 1500 complete FMA and UDS cases at baseline and more than 600 follow-up datasets from 45 providers nationwide. Feedback indicates use of the FMA and UDS does not add burden to the clinical routine.

Conclusions: A registry in the field of WMS has been developed and shown to be feasible in a clinical setting. This has created an opportunity to collect large datasets to increase sample sizes for future analyses to more scientifically evaluate what types of WMS devices work best for what types of patients under varying circumstances to promote health and participation.