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

Abstract

Introduction: 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 of pains and discomfort should form part of all routine consultations.