TY - JOUR
T1 - Pain experience, expression and coping in boys and young men with Duchenne muscular dystrophy - a pilot study using mixed methods
AU - Hunt, A
AU - Carter, Bernie
AU - Abbott, J
AU - Parker, A
AU - deGoede, C
AU - Spinty, S
PY - 2016/3/17
Y1 - 2016/3/17
N2 - 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
AB - 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
U2 - 10.1016/j.ejpn.2016.03.002
DO - 10.1016/j.ejpn.2016.03.002
M3 - Article (journal)
VL - 20
SP - 630
EP - 638
JO - European Journal of Paediatric Neurology
JF - European Journal of Paediatric Neurology
SN - 1090-3798
IS - 4
ER -
