The development of a consensus statement for the prescription of powered wheelchair standing devices in Duchenne muscular dystrophy

Abstract

Purpose

To develop a consensus statement for the prescription of a Powered Wheelchair Standing Device (PWSD) in young people with Duchenne muscular dystrophy (DMD).

Materials and methods

An international multidisciplinary panel comprising clinicians and users (young people with DMD) along with their parents was consulted. A literature review was undertaken and a Delphi method was utilised to generate consensus statements. To supplement limited literature, round one of the Delphi process comprised questions consistent with the International Classification of Functioning, Disability and Health model of disability to generate items based on expert opinion and was completed by 38 clinicians and nine users. Thirty-seven participants completed two further rounds rating the importance of each item with a five-point scale. Agreement of 70% or more participants for items indicated consensus.

Results

Consensus was reached for 47 of 80 items. Tolerance and comfort in supported standing for at least 10 min, ankle contracture less than 10 degrees and user goals reflecting motivation to use the standing function were agreed as necessary in guiding the decision to trial a PWSD. Evidence of family, therapist and servicing support were also considered critical in enabling continuity of PWSD use.

Conclusions

PWSD is a mobility option that offers choice, control and opportunity for independence. This consensus statement can assist clinicians with decision-making around factors influencing successful implementation and optimisation of PWSD for young people with DMD.

Implications for Rehabilitation

• Tolerance and comfort in supported standing for at least 10 minutes, ankle contracture limited to less than 10 degrees and the child’s goals reflecting motivation to use the standing position were agreed to be necessary considerations in guiding the decision to trial a PWSD.

• Trialling a PWSD when the child is predicted to lose the ability to walk within a one to two year period was recommended although a PWSD could be suitable for a child who was unable to walk.

• Evidence of family, therapist and servicing support was considered critical in enabling continuity of PWSD use.

Keywords:

• Duchenne muscular dystrophy
• Delphi technique
• powered standing wheelchair devices
• wheelchairs
• durable medical equipment
• posture rehabilitation
• clinical decision-making

Acknowledgements

The authors would like to acknowledge and thank the expert panel members including clinicians, parents, boys and young adults with Duchenne muscular dystrophy who contributed to the Delphi process.

Author contributions

JD, CS, NMV, KB, KE, HY and KC designed and led the study. JD and CS conducted the analyses. All authors contributed to the data collection and preparation of the manuscript. JD and CS wrote the first draft of the manuscript. All authors have critically reviewed the final version. All authors have approved the final article.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This study was funded by Save Our Sons Duchenne Foundation, Australia. The funding source had no involvement in the study design; collection, analysis and interpretation of data; or the decision to submit the manuscript for publication.