Advertisement

Development and Implementation of a Wheelchair Outcomes Registry

Published:April 02, 2019DOI:https://doi.org/10.1016/j.apmr.2019.03.007

      Abstract

      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.

      Keywords

      List of abbreviations:

      FMA (Functional Mobility Assessment), PWD (people with disabilities), UDS (uniform dataset), VGM (Van G. Miller), WMS (wheeled mobility and seating)
      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Archives of Physical Medicine and Rehabilitation
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Brault M.W.
        Americans with disabilities: 2010. (Report Number P70-131).
        U.S. Government Printing Office, Washington (DC)2012
        • Lange M.L.
        • Minkel J.L.
        Seating and wheeled mobility: a clinical resource guide.
        SLACK Incorporated, Thorofare, NJ2018
        • Jette A.
        • Balcazar F.
        • Ball L.
        • et al.
        The promise of assistive technology to enhance activity and work participation.
        National Academies Press, Washington (DC)2017
        • Greer N.
        • Brasure M.
        • Wilt T.J.
        Wheeled mobility (wheelchair) service delivery: scope of the evidence.
        Ann Intern Med. 2012; 156: 141-146
        • Cohen L.
        • Greer N.
        • Berliner E.
        • Sprigle S.
        Mobility RERC State of the Science Conference: considerations for developing an evidence base for wheeled mobility and seating service delivery.
        Disabil Rehabil Assist Technol. 2013; 8: 462-471
        • Gliklich R.
        • Leavy M.
        • Karl J.
        • Campion D.
        • Levy D.
        • Berliner E.
        A framework for creating standardized outcome measures for patient registries.
        J Comp Eff Res. 2014; 3: 473-480
        • World Health Organization
        International classification of functioning, disability and health: ICF.
        World Health Organization, Geneva, Switzerland2001
        • Kumar A.
        • Schmeler M.R.
        • Karmarkar A.M.
        • et al.
        Test-retest reliability of the Functional Mobility Assessment (FMA): a pilot study.
        Disabil Rehabil Assist Technol. 2013; 8: 213-219
        • Mills T.L.
        • Holm M.B.
        • Schmeler M.R.
        (2007). Test-retest reliability and cross validation of the functioning every day with a wheelchair instrument.
        Assist Technol. 2007; 19: 61-75
        • Beavers D.B.
        • Holm M.B.
        • Rogers J.C.
        • Plummer T.
        • Schmeler M.
        Adaptation of the adult Functional Mobility Assessment (FMA) into a FMA-Family Centred (FMA-FC) paediatric version.
        Child Care Health Dev. 2018; 44: 630-635
        • FMA Outcomes Functional Mobility Assessment
        Functional Mobility Assessment (FMA) project.
        (Available at:) (Accessed September 24, 2018)
        • U.S. Rehab
        Providing solutions for complex rehab providers.
        (Available at:) (Accessed September 24, 2018)