Douleur, ostéopénie et composition corporelle chez 22 patients atteints de dystrophie musculaire progressive de Duchenne. Étude descriptive

Pain experience, expression and coping in boys and young men with Duchenne Muscular Dystrophy – A pilot study using mixed methods

“…This study and the small number of studies investigating pain in this population show that pain can be a characteristic of the disease throughout its course, indeed Douvillez et al (2005) found that pain (largely due to falls) was greater in the younger boys who were still ambulant. 16 describe potential interventions many of which will help prevent or alleviate pain. 17,33 In this pilot study the majority (two-thirds) of young men (not recruited for the presence of pain) suffered from significant daily pain.…”

“…Whilst management of the condition has improved dramatically, 2e6 management of pain has not always appeared to be a clinical or research priority. 7,8 The many and varied complications of DMD, including muscle weakness and lack of mobility, 9e11 spinal deformity, 12 constipation, 13 delay in gastric emptying, 14 cardiomyopathy 15 and osteopenia/osteoporosis, 16 increase the risk to experience many types of pain throughout the progression of the disorder. There is increasing evidence that pain is a significant issue for boys and young men with Duchenne Muscular Dystrophy and should not be ignored.…”

Frequency of reported pain in adult males with muscular dystrophy

“…A Visual Analog Scale (VAS) of pain was used to quantify the level of whole body pain felt by participants over the last 7 days. VAS is a common method of pain assessment [40] and has been used in many conditions [19, 20, 41]. Participants were given a 10cm straight line, at one end “No Pain”, and the other “Worst Possible Pain”, and instructed to mark where on the scale best represented the pain they had felt over the last 7 days.…”

“…Within FSHD, pain has been quantified using pain diaries, analogue scales and body maps, with the predominance of MD pain research focusing on this condition [11, 14, 18]. In other MDs, pain has been presented using a Visual Analogue Scale (VAS) [19–22], a reliable and valid, single measure, providing a whole body score of pain [23]. A whole body measure of pain however, offers little information in relation to body regions [24].…”