Pain experience, expression and coping in boys and young men with Duchenne muscular dystrophy - a pilot study using mixed methods

A Hunt, Bernie Carter, J Abbott, A Parker, C deGoede, S Spinty

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5 Citations (Scopus)
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Abstract

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 to 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
Original languageEnglish
Pages (from-to)630-638
JournalEuropean Journal of Paediatric Neurology
Volume20
Issue number4
Early online date17 Mar 2016
DOIs
Publication statusE-pub ahead of print - 17 Mar 2016

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