title: Pain experience, expression and coping in boys and young men with Duchenne Muscular Dystrophy - A pilot study using mixed methods.
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 11-21 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.
authors.affiliation: School of Health, University of Central Lancashire, Preston, UK. Electronic address: ahuntatregency@gmail.com.
authors.forename: Anne
authors.initials: A
authors.lastname: Hunt
authors.affiliation: Alder Hey Children's NHS Foundation Trust, Liverpool, UK; Edge Hill University, Ormskirk, Lancashire, UK.
authors.forename: Bernie
authors.initials: B
authors.lastname: Carter
authors.affiliation: School of Psychology, University of Central Lancashire, Preston, UK.
authors.forename: Janice
authors.initials: J
authors.lastname: Abbott
authors.affiliation: School of Health, University of Central Lancashire, Preston, UK.
authors.forename: Arija
authors.initials: A
authors.lastname: Parker
authors.affiliation: Alder Hey Children's NHS Foundation Trust, Liverpool, UK.
authors.forename: Stefan
authors.initials: S
authors.lastname: Spinty
authors.affiliation: Lancashire Teaching Hospitals NHS Foundation Trust, Preston, UK.
authors.forename: Christian
authors.initials: C
authors.lastname: deGoede
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D002648:Child; D005240:Feasibility Studies; D006801:Humans; D008297:Male; D020388:Muscular Dystrophy, Duchenne / Q000150:complications / Q000503:physiopathology / Q000523:psychology*; D010146:Pain / Q000209:etiology / Q000503:physiopathology / Q000523:psychology*; D010147:Pain Measurement; D010290:Parents; D010865:Pilot Projects; D036301:Qualitative Research; D011788:Quality of Life; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Adaptive behaviour; Child; Duchenne Muscular Dystrophy; Neuromuscular disease; Pain assessment; Pain measurement