Pain characterization in Duchenne muscular dystrophy

Abstract

Duchenne muscular dystrophy (DMD) is an X-linked recessive disorder, characterized by progressive muscle weakness. Historically, pain has not been considered to be a major symptom in DMD. Objective To investigate the relationship between DMD and pain. Methods We conducted a systematic review in Medline/PubMed and BVS (virtual library in health) databases. We searched for articles that showed the terms “Muscular Dystrophy, Duchenne” and “Pain” in all fields. All studies included boys diagnosed with DMD and the occurrence/amount of pain on this population. Results Initially, there were 175 studies. 167 articles were excluded for not meeting the inclusion criteria. The remaining eight eligible studies, involving pain assessment in DMD, were analyzed. Conclusion Pain is a frequent problem in this population and this symptom is potentially tractable. Studies conclude that pain can directly influence the quality of life of this population.

Palliative care services in families of males with muscular dystrophy: Data from MD STARnet

“…11 This result remains of interest, as a comprehensive review of pain research in DMD concludes that it is a common problem in this population. 15 The data suggest that pain may be treated by providers not associated with formal pain management services. Ironically, respiratory care and skilled nursing were reported less frequently than in our previous study despite the release of guidelines on respiratory care and monitoring in 2004.…”

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

“…We suspect that the ambulatory boys, P6 and P7, reported discomfort during dance and sport with able-bodied peers due to sustained end-of-range stretches in PWSD stand postures for long periods during these activities. Pain is known to affect boys and young men with DMD, often worsening with progression of disease (Engel et al, 2009; Silva et al, 2016; Zebracki & Drotar, 2008). Pain was a reported barrier for P9 who ceased standing in his PWSD.…”

“…While a conventional power wheelchair (PWC) is a primary enabling intervention for boys with DMD aged 8 to 14 years (Birnkrant et al, 2018; Case et al, 2018; Muscular Dystrophy Campaign, 2011), prolonged sitting and wheelchair dependency leads to problems such as genitourinary problems (Backhouse & Harding, 2006), chronic pain and orthopedic complications (Engel et al, 2009; Richardson & Frank, 2009; Silva et al, 2016). Equipment such as standing frames are often recommended for physiological benefits for boys with DMD but poor adherence to static standing devices prevents optimum use (Pandya et al, 2016; Pedlow et al, 2019; Townsend et al, 2016).…”

The Relationship Between Scoliosis and Wheelchair Use In Patients With Duchenne Muscular Dystrophy

“…Ağrı, DMD'de yaşam kalitesini düşüren bir semptomdur ve özellikle tekerlekli sandalye kullanılmaya başlandığı dönemde ayrıntılı değerlendirilmesi gerekir (23)(24)(25) . Çalışmamızda, skolyozu olan DMD'lilerin %87'sinde ağrı saptandı.…”