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

Abstract

This paper is a description of the updated care considerations for Duchenne muscular dystrophy originally published in 2010. This paper is the second of three papers that address the shifts in care and understanding of the disease since the previous publication in order to understand the new and everchanging care considerations which acompany the longer lifespan of those with DMD. This paper contributed to the development of item 5 for Walking in Table 2 indicating that standing programs including use of wheelchairs with upright positioning should commence in the early non-ambulatory phase.

Stakeholder perspectives of pediatric powered wheelchair standing devices: a qualitative study

“…13 A recent Delphi study regarding the prescription of PWSDs in DMD provides additional details to inform the reasoning processes surrounding provision of PWSDs in DMD. 15 While these studies provide some insights into PWSD use in males with DMD, 11,13 they do not reflect PWSD use in children with other conditions. To begin addressing this knowledge gap, it is important to gather input from both individuals who are directly affected by PWSD use and those who are involved in the provision of PWSDs.…”

“…12 To our knowledge, existing PWSD research in pediatrics is limited to males with Duchenne muscular dystrophy (DMD). 11,[13][14][15] The first, a single-case design, investigated the efficacy of a 6-to 12-month home-based standing program using a PWSD. 11 Improved hip or knee flexor muscle length was noted in three of the four participants; 11 however, none of the participants demonstrated increased bone mineral density.…”

Everyday Life Participation Using Powered Wheelchair Standing Devices by Boys With DMD

“…Understanding the characteristics of boys who successfully use PWSDs in daily life can help clinicians identify boys most suited to using them. This will assist decision-making about, and prescription of, this high-cost equipment (Lukersmith, 2012; Schofield et al, 2020). Identifying the subset of “high frequency users” is also important for researchers.…”

“…Supported standing in a powered wheelchair standing device (PWSD; also known as a sit-to-stand wheelchair) provides mobility and independence for moving from sitting to standing and has attracted increasing interest for boys with DMD (Case et al, 2018; Mannlein & Pangilinan, 2008; Pedlow et al, 2019; Schofield et al, 2020; Townsend et al, 2016). It is important to understand the use of the supported standing feature and prevent its abandonment since, without it, the PWSD merely performs the function of a seated PWC which could have been provided at lower cost.…”

“…Supported standing in PWSDs by boys with DMD has potential to enable participation in everyday activities (Vorster et al, 2019), maintain musculoskeletal status and mental health benefits (Bayley et al, 2020). According to consensus guidelines on prescription of PWSDs for boys with DMD (Schofield et al, 2020), therapists and users agree on necessary considerations. However, peer-reviewed literature is limited (Pedlow et al, 2019).…”