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Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
Published on: January 12, 2019
Pain and activity limitations in children with Duchenne or Becker muscular dystrophy
Kathy Zebracki1, Dennis Drotar
1Department of Psychology, Loyola University Chicago, 6525 N. Sheridan Road, Chicago, IL 60626, U.S.A. kzebrac@luc.edu
Insights
Pain is common in boys with Duchenne (DMD) or Becker (BMD) muscular dystrophy, often under-recognized by physicians. Standardized pain assessments are crucial for identifying and addressing activity limitations in these children.
Area of Science:
- Pediatric Neuromuscular Disorders
- Pain Management in Chronic Illness
- Musculoskeletal Health
Background:
- Duchenne muscular dystrophy (DMD) and Becker muscular dystrophy (BMD) are genetic disorders causing progressive muscle weakness.
- Pain is a frequently reported symptom in pediatric populations with neuromuscular conditions.
- Understanding pain prevalence and characteristics is vital for improving patient care and quality of life.
Purpose of the Study:
- To investigate the prevalence and characteristics of pain in children diagnosed with DMD or BMD.
- To explore discrepancies in pain reporting among children, parents, and physicians.
- To assess the impact of pain on the daily activities of affected children.
Main Methods:
- A cross-sectional study involving 53 male children (aged 8-18) with DMD or BMD and their parents.
- Utilized validated questionnaires for pain intensity, frequency, duration, emotional distress, and location.
- Included the Child Activity Limitations Interview and physician-reported medical history and pain symptoms.
Main Results:
- A high prevalence of pain was reported by children (54-80%) and parents (70-90%), occurring at least weekly with mild to moderate intensity.
- Pain commonly affected the lower back, spine, and legs, described as 'aching'.
- Significant disparities existed in pain intensity reporting between children/parents and physicians, with poor parent-child agreement on pain symptoms.
Conclusions:
- Pain is a prevalent and potentially under-recognized issue in children with DMD and BMD.
- Pain assessment should be integrated into routine care to identify and manage activity limitations.
- Addressing pain effectively can improve the functional capacity and well-being of children with these muscular dystrophies.
Abstract:
The purpose of this study was to examine the prevalence and characteristics of pain in children with Duchenne (DMD) or Becker (BMD) muscular dystrophy, including the nature of disagreements concerning pain symptoms among children, parents, and physicians, and limitations in daily activities. Male children (age 8-18 y, n=53) and parents (n=53) completed questionnaires assessing pain intensity (visual analogue scale), pain frequency (Likert scale [LS]), pain duration (LS), emotional distress due to pain (LS), and pain location (body outline markings). The Child Activity Limitations Interview was also completed by both raters to assess daily activities that are limited by recurrent pain. Physicians completed a form indicating medical history and pain symptoms. The majority of children with DMD (mean age 13 y 11 mo [SD 3.38]; range 8-18 y) or BMD (mean 14 y 10 mo [SD 1.48]; range 12-17 y) were non-ambulatory (79 and 50% respectively) and experienced pain according to self (54-80%) and parent reports (70-90%). Pain typically occurred at least once per week and was of mild to moderate intensity. Most children experienced pain for less than a few hours and little to moderate levels of emotional distress due to pain. Pain occurred in the lower back, spine, and legs, and was described as 'aching'. Children and parents indicated significantly more intense pain than the physician. Actual agreement between parent and child report on pain symptoms was poor to fair. Pain is a common occurrence in children with DMD or BMD, yet may be under-recognized. Pain assessment needs to be a standard part of care and may identify difficulties faced by these children to be targeted by interventions.
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