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Updated: Mar 23, 2026

Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
Published on: January 12, 2019
Pain experience, expression and coping in boys and young men with Duchenne Muscular Dystrophy - A pilot study using
Anne Hunt1, Bernie Carter2, Janice Abbott3
1School of Health, University of Central Lancashire, Preston, UK.
Unlabelled:
There is limited research exploring the pain experience of boys and young men with Duchenne Muscular Dystrophy.
Methods:
We conducted a mixed-methods pilot study to assess the feasibility of using particular measures of pain, pain coping and quality of life within semi-structured interviews with boys and young men with Duchenne Muscular Dystrophy and a postal survey of their parents. Non-probability, convenience sampling was used.
Results:
Twelve young men aged 11-21 years (median 15 years), three of whom were still ambulant, and their parents/guardians were recruited. The measures used were acceptable to the young men and demonstrated potential to provide useful data. Two-thirds of young men suffered from significant daily pain which was associated with reduced quality of life. Pain complaints were largely kept within the family. Young men's pain-coping strategies were limited by their restricted physical abilities. Statistical power based on these preliminary results suggests a study of approximately 50 boys/young men which appears feasible.
Conclusions:
Further study is needed to explore acceptable and effective methods of pain management in this population and ways of enhancing pain-coping strategies. In clinical practice, assessment of pains and discomfort should form part of all routine consultations.
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