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Hunt, Anne; Carter, Bernie; Abbott, Janice; Parker, Arija; Spinty, Stefan; deGoede, Christian (2016)
Publisher: Elsevier BV
Journal: European Journal of Paediatric Neurology
Languages: English
Types: Article
Subjects: Pediatrics, Perinatology, and Child Health, B700, Clinical Neurology
Introduction: There is limited research exploring the pain experience of boys and young men with Duchenne Muscular Dystrophy. \ud Methods: We conducted a mixed-methods pilot study to assess the feasibility of using particular measures of pain, pain\ud 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. \ud 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\ud 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\ud boys/young men which appears feasible. \ud Conclusions: Further study is needed to explore acceptable and effective methods of pain management in this population\ud 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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