Preliminary steps of the development of a Minimum Uniform Dataset applicable to the international wheelchair sector

Assistive products outcomes are needed globally to inform policy, practice, and drive investment. The International Society of Wheelchair Professionals developed a Minimum Uniform Dataset (MUD) for wheelchair services worldwide with the intent to gather data that is comparable globally. The MUD was developed with the participation of members from around the globe and its feasibility piloted at 3 sites. Three versions of the MUD are now available—a short form with 29 data points (available in English, Spanish, and French) and a standard version with 38 data points in English. Future work is to validate and complete the translation cycles followed by promoting the use of the MUD globally so that the data can be leveraged to inform policy, practice and direct investments.

[1]  Karen L Rispin,et al.  Development of the Wheelchair Interface Questionnaire and initial face and content validity , 2019, African journal of disability.

[2]  M. Power,et al.  Development of the World Health Organization WHOQOL-BREF Quality of Life Assessment , 1998 .

[3]  Walter Sermeus,et al.  Revising the Belgian Nursing Minimum Dataset: From concept to implementation , 2005, Int. J. Medical Informatics.

[4]  N. Bray,et al.  Wheelchair interventions, services and provision for disabled children: a mixed-method systematic review and conceptual framework , 2014, BMC Health Services Research.

[5]  Marcia J Scherer,et al.  Assistive technology and people: a position paper from the first global research, innovation and education on assistive technology (GREAT) summit , 2018, Disability and rehabilitation. Assistive technology.

[6]  A. Ross,et al.  Assistive technologies for ageing populations in six low-income and middle-income countries: a systematic review , 2015, BMJ Innovations.

[7]  R. Grainger,et al.  Telehealth delivery of remote assessment of wheelchair and seating needs for adults and children: a scoping review , 2020, Disability and rehabilitation.

[8]  Jonathan Pearlman,et al.  The impact of the World Health Organization 8-steps in wheelchair service provision in wheelchair users in a less resourced setting: a cohort study in Indonesia , 2015, BMC Health Services Research.

[9]  Rosemary Joan Gowran,et al.  Developing country-specific wheelchair service provision strategic plans for Romania and the Philippines , 2019, Disability and rehabilitation. Assistive technology.

[10]  J. Jelsma,et al.  Caring for a child with Cerebral Palsy: The experience of Zimbabwean mothers , 2015, African journal of disability.

[11]  S. Shore,et al.  The impact of a low cost wheelchair on the quality of life of the disabled in the developing world , 2012, Medical science monitor : international medical journal of experimental and clinical research.

[12]  Ralf Dresner,et al.  Health Measurement Scales A Practical Guide To Their Development And Use , 2016 .

[13]  E. Doheny United States Agency for International Development , 2011 .

[14]  Un Desa Transforming our world : The 2030 Agenda for Sustainable Development , 2016 .

[15]  Lora Giangregorio,et al.  Researching Complex Interventions in Health: The State of the Art , 2016, BMC Health Services Research.

[16]  Mark Harniss,et al.  Assistive technology in resource-limited environments: a scoping review , 2017, Disability and rehabilitation. Assistive technology.

[17]  Richard M. Schein,et al.  Development and Implementation of a Wheelchair Outcomes Registry. , 2019, Archives of physical medicine and rehabilitation.

[18]  Amol M Karmarkar,et al.  The Uniform Data System for Medical Rehabilitation: Report of Patients with Debility Discharged from Inpatient Rehabilitation Programs in 2000–2010 , 2013, American journal of physical medicine & rehabilitation.

[19]  Adaptation of the adult Functional Mobility Assessment (FMA) into a FMA‐Family Centred (FMA‐FC) paediatric version , 2018, Child: care, health and development.

[20]  Wesley Pryor,et al.  Unmet Needs and Use of Assistive Products in Two Districts of Bangladesh: Findings from a Household Survey , 2018, International journal of environmental research and public health.

[21]  Michelle Brasure,et al.  Wheeled Mobility (Wheelchair) Service Delivery: Scope of the Evidence , 2012, Annals of Internal Medicine.

[22]  Marcia J Scherer,et al.  Systems thinking for assistive technology: a commentary on the GREAT summit , 2018, Disability and rehabilitation. Assistive technology.

[23]  M. Molinari,et al.  The Overlooked Outcome Measure for Spinal Cord Injury: Use of Assistive Devices , 2019, Front. Neurol..

[24]  P. Raina,et al.  The Canadian Longitudinal Study on Aging (CLSA)* , 2009, Canadian Journal on Aging / La Revue canadienne du vieillissement.

[25]  Karen L Rispin,et al.  A conceptual framework to assess effectiveness in wheelchair provision , 2017, African journal of disability.

[26]  P. New,et al.  A population-based study comparing traumatic spinal cord injury and non-traumatic spinal cord injury using a national rehabilitation database , 2011, Spinal Cord.

[27]  W. Miller,et al.  Use of single-subject research designs in seating and wheeled mobility research: a scoping review , 2020, Disability and rehabilitation. Assistive technology.

[28]  S. Lane,et al.  Assistive Technology for Children with Disabilities , 2003, Occupational therapy in health care.

[29]  K. Cullen,et al.  Research on the provision of Assistive Technology in Ireland and other countries to support independent living across the life cycle , 2012 .

[30]  Karen Rispin,et al.  Preliminary reliability and internal consistency of the Wheelchair Components Questionnaire for Condition , 2017, Disability and rehabilitation. Assistive technology.

[31]  A. Terkawi,et al.  Guidelines for developing, translating, and validating a questionnaire in perioperative and pain medicine , 2017, Saudi journal of anaesthesia.

[32]  Amol M Karmarkar,et al.  Test-retest reliability of the functional mobility assessment (FMA): a pilot study , 2013, Disability and rehabilitation. Assistive technology.

[33]  C. Vega,et al.  Convention on the Rights of Persons with Disabilities and Optional Protocol , 2013 .

[34]  L. Turner-Stokes,et al.  Comparison of Rehabilitation Outcomes for Long Term Neurological Conditions: A Cohort Analysis of the Australian Rehabilitation Outcomes Centre Dataset for Adults of Working Age , 2015, PloS one.

[35]  Bruce Wydick,et al.  Wheels of fortune: the economic impacts of wheelchair provision in Ethiopia , 2016 .

[36]  Michael L Boninger,et al.  Manual wheelchair skills capacity predicts quality of life and community integration in persons with spinal cord injury. , 2012, Archives of physical medicine and rehabilitation.

[37]  Anna Lindström,et al.  Assistive technology in developing countries: national and international responsibilities to implement the Convention on the Rights of Persons with Disabilities , 2009, The Lancet.

[38]  Anna Lindström,et al.  Assistive technology in developing countries: a review from the perspective of the Convention on the Rights of Persons with Disabilities , 2011, Prosthetics and orthotics international.

[39]  Catalina Devandas-Aguilar Report of the Special Rapporteur on the Rights of Persons with Disabilities on her visit to the Democratic People's Republic of Korea : , 2017 .

[40]  T. Stevermuer,et al.  Comparison of patients managed in specialised spinal rehabilitation units with those managed in non-specialised rehabilitation units , 2011, Spinal Cord.

[41]  S. Visagie,et al.  Is any wheelchair better than no wheelchair? A Zimbabwean perspective , 2015, African journal of disability.

[42]  Rosemary Joan Gowran,et al.  Assistive technology policy: a position paper from the first global research, innovation, and education on assistive technology (GREAT) summit , 2018, Disability and rehabilitation. Assistive technology.

[43]  J. Gómez,et al.  Surveys and Questionnaires , 2018 .