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

To develop a consensus statement for the prescription of a Powered Wheelchair Standing Device (PWSD) in young people with Duchenne muscular dystrophy (DMD). 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. 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. 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 RehabilitationTolerance 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. 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.本研究旨在为杜氏肌营养不良（Duchenne muscular dystrophy, DMD）青少年制定电动站立轮椅（Powered Wheelchair Standing Device, PWSD）的临床处方共识声明。研究组建了由临床医生、青少年DMD患者（设备使用者）及其家属组成的国际多学科专家小组，开展系统性文献综述，并采用德尔菲法（Delphi method）生成共识评估条目。鉴于现有相关文献较为有限，德尔菲法第一轮调研采用与国际功能、残疾和健康分类（International Classification of Functioning, Disability and Health, ICF）残疾模型相符的问题框架，基于专家意见生成评估条目，最终有38名临床医生与9名患者完成本轮调研。另有37名参与者完成后续两轮评估，以五分制评分量表对各条目的重要性进行评分。当70%及以上参与者对某一条目达成一致意见时，即判定为达成共识。最终80个评估条目中共有47个达成共识。共识明确，在指导PWSD试用决策时，需满足三项必要条件：辅助站立状态下至少10分钟的耐受性与舒适度、踝关节挛缩程度小于10度，以及患者目标体现出使用站立功能的主观意愿。此外，家庭、治疗团队及设备维保支持的相关证据，对保障PWSD的持续使用至关重要。PWSD作为一种移动出行方案，可为患者提供自主选择权、操作掌控感与独立生活的机会。本共识声明可协助临床医生针对影响青少年DMD患者成功应用并优化PWSD的各类因素开展临床决策。康复应用启示：辅助站立状态下至少10分钟的耐受性与舒适度、踝关节挛缩限制在10度以内，以及患者目标体现出使用站立姿势的意愿，均被视为指导PWSD试用决策的必要考量因素。建议在预计患儿1至2年内将丧失行走能力时启动PWSD试用，但PWSD同样适用于已无法行走的患儿。家庭、治疗师及设备维保支持的相关证据，被认定为保障PWSD持续使用的核心要素。