G.P.305: Pain in adolescents with spinal muscular atrophy and Duchenne and Becker muscular dystrophy

Abstract

Pain is a frequent problem in neuromuscular disorders. It is essential for physical therapists and physicians to systematically assess pain and offer an individual approach of interventions to reduce pain in this population. The aim of this study was to explore the prevalence, nature and scope of pain in adolescents with spinal muscular atrophy and Duchenne and Becker muscular dystrophy, and whether the pain differs between diagnostic groups or between adolescents with different ambulation status. Furthermore to study the consequences of pain in everyday life and to identify pain-exacerbating and pain-relieving factors. Fifty-five adolescents, 12–18 years of age, with spinal muscular atrophy and Duchenne and Becker muscular dystrophy completed a questionnaire assessing pain frequency, duration, location (body map), intensity and discomfort (visual analogue scales), pain interference (modified Brief Pain Inventory) and factors exacerbating and relieving pain. The response rate was 71%. Sixty-nine percent of the adolescents reported pain during the past three months and 50% reported persistent or recurrent chronic pain. The pain prevalence did not differ significantly between diagnostic groups or between ambulators and non-ambulators. The pain typically occurred weekly, 20% reported daily pain and four percent reported constant pain. The most frequently reported pain sites were the neck/back and legs. The adolescents’ average pain intensity ratings over the past week were graded as mild and their worst pain as moderate. The most common pain-exacerbating factors were sitting, too much movement/activity and being lifted and transferred. The most common factors identified to relieve pain were resting, changing position, massage and use of analgesics. Activities and participation were affected by pain, but only to some extent for the group as a whole. General activity and mood were the areas that were most affected by pain.