Quality of life of patients with Duchenne muscular dystrophy: from adolescence to young men

Abstract

The adolescent and young men with DMD had poor health-related and global QOL. Poor QOL was related to both physical condition and social health. We suggest that rehabilitation programs focus on using assistive devices to facilitate arm function and encouraging participation in social activities to improve the QOL of patients with DMD. Implications for rehabilitation Duchenne muscular dystrophy (DMD) is a progressive muscle weakness disease that not only impacts physical health but also leads to poor quality of life in many domains. A valuable rehabilitation goal for patients with DMD is to encourage participation in social activities. Medical care and educational programs should plan a formal transition processes for patients with DMD from pediatric to adult care to maximum their quality of life. Arm function is associated with many domains of global quality of life, so a key element in improving quality of life may be to improve arm function.

Rehabilitation Management of the Patient With Duchenne Muscular Dystrophy

“…Supported standing devices for individuals with no or mild LE contractures are necessary for late-ambulatory and early nonambulatory stages, including standers and stand-and-drive motorized wheelchairs, extending Health-related quality of life 76 Activity monitoring 60,89,90 Supine to sit Functional Independence Measure 81 Questionnaire for neuromuscular diseases 77 DMD Upper Limb Patient-Reported Outcome Measure 91 6-min walk test 58 Pediatric Functional Independence Measure 82 Life satisfaction index for adolescents 92,93 Gait, stairs, Gower, chair 66 School Function Assessment 83 Children's Assessment of Participation and Enjoyment and Preferences for Activities of Children 94 Motor function measure 95 Activities-Specific Scale for Kids 96 Brooke Upper Extremity Scale 97 Vignos Lower Extremity Scale 97 Egen Klassifikation Scale 98 9-hold peg test 99 Jebsen- Taylor benefits previously reported with the use of KAFOs. 2, 3, 7, 8, 13, 16, 28, 44 -53, 112 Supported standing for prolonged passive elongation of LE musculature should be considered when standing and walking in good alignment become difficult.…”

Developing multidisciplinary clinics for neuromuscular care and research

“…With improved survival, children grow into young adults followed in the pediatric clinic, although they do ultimately require continued care in adult neuromuscular clinics . A key aspect of providing comprehensive care to pediatric neuromuscular patients is to establish a transition of care team for young adults with neuromuscular disease . This is especially necessary during hospital admissions when the needs of young adult patients can be better addressed on an adult inpatient unit.…”

“…25,26 A key aspect of providing comprehensive care to pediatric neuromuscular patients is to establish a transition of care team for young adults with neuromuscular disease. 26,27 This is especially necessary during hospital admissions when the needs of young adult patients can be better addressed on an adult inpatient unit.…”

Hand neuro-motor characterization and motor intention decoding in Duchenne muscular dystrophy

“…Functional interaction with the world heavily relies on hand manipulation, a central element for every individual in performing the activities of daily living (ADL) [237]. However, the dynamic support of hand functioning in individuals with DMD remains a challenge [22].…”

“…The hand plays a central role in performing activities of daily living (ADL), and its use is related to an increased quality of life in individuals with DMD [237]. Despite this, hand treatment for such individuals presents moderate results [22].…”