POTENTIAL CONFLICT OF INTEREST: Within the past 12 months, Dr Gibbons was a consultant for Sarepta Therapeutics and attended an advisory board meeting; the other authors have indicated they have no potential conflicts of interest to disclose. Significant progress has been made in managing the medical needs of patients who have Duchenne muscular dystrophy (DMD). As a result, many patients live well into adulthood and have the potential to lead independent, productive lives. However, the challenge of coping with a chronic and progressive illness from childhood into young adulthood is formidable. Close monitoring and appropriate interventions focused on improving emotional and social functioning should be The guidelines or recommendations in this article are not American Academy of Pediatrics policy, and publication herein does not imply endorsement. In this article, we outline a comprehensive plan for the psychosocial management of patients with Duchenne muscular dystrophy (DMD) across the life span. In 2010, the Centers for Disease Control and Prevention sponsored the development of multidisciplinary management guidance for DMD, and in 2018, that guidance was updated. In the intervening years, a new emphasis was placed on studying and addressing the psychosocial issues that affect patients with DMD, driven in part by improved patient survival. Once viewed as ancillary to managing the significant medical needs of patients with DMD, it is now standard practice to integrate psychosocial management into the multidisciplinary management of the disease. It is also increasingly recognized that neurodevelopmental disorders in DMD occur at a higher rate than what was previously understood and that these disorders warrant early and intensive intervention. In this article, we expand on the content found in the 2018 DMD Care Considerations.

The new Special Educational Needs and Disability legislation in the Children and Families Act 2014 intends to raise the aspirations of young people with special educational needs and their families, and improve their life outcomes. But what do raised aspirations and better outcomes look like for young people who have a life-limiting impairment? This article draws on data from a parent evaluation of a lottery-funded Transition to Adulthood project for boys with Duchenne muscular dystrophy (DMD), called 'Takin' Charge', focusing in particular on whether or not the project helped parents of boys with DMD prepare for the future. Key themes that emerged were the importance and novelty of older role models with DMD in the project who were able to share their journeys into adulthood, the support between families that the project enabled, the meaning of family resilience and aspirations for a normal life. The use of solution-focused questioning with families affected by a life-limiting impairment is also explored.

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Abstract:Duchenne muscular dystrophy (DMD) is a progressive genetic condition that affects both muscle and brain. Children with DMD are at risk of psycho-social difficulties such as poor academic achievement and behavioural and socio-emotional problems. This article by Janet Hoskin and Angela Fawcett, both from the University of Swansea, describes how 34 participants with DMD took part in a 36-week online literacy intervention which was delivered in partnership between home and school. The key objective was to improve reading skill. Participants were re-tested at 36 weeks for single word and text level reading, comprehension, fluency, processing and timed single word reading. Pre and post results indicated that children who followed the intervention for 36 weeks made significant improvement in their single word reading (p = <0.0001), timed single word reading (p = <0.0001) and text level reading (p = <0.004). They also made significant improvement in their fluency and comprehension scores. The results showed that children with DMD and related literacy difficulties benefit from a regular, structured and systematic synthetic phonics programme. With young people with DMD increasingly living into adulthood, early literacy intervention is particularly important to ensure optimum career and training opportunities.Duchenne muscular dystrophy (DMD) is a chronic and progressive muscle wasting individuals, there is an established prognosis for DMD due to the lack of the protein dystrophin being made condition, caused by a fault on the dystrophin gene, one of the largest genes in the human genome (Emery & Muntoni 2003). It is an X-chromosome linked disease and therefore overwhelmingly affects boys, one in 3,600 -6,000 male births (Drousiotou, Ioannou, Georgiou et al. 1998; Emery 1991). Although aspects of the condition can vary between which acts as a stabiliser in the muscle cells. Most children are diagnosed at around the age of five years (Bushby, Hill and Steel 1999) and without any intervention muscle deterioration results in lack of ambulation before they are teenagers with respiratory, cardiac and orthopaedic complications developing as they grow older. Without any treatment, the average age of death is around 19 years (Bushby et al 2010).However, more recently with the use of interventions over the past twenty years such as daily steroids, night ventilation, cardiac monitoring and spinal surgery to address scoliosis, life expectancy has increased to an average of 27 years (Eagle et al 2002;Eagle et al 2007). Since the publication of Eagle's research in 2007, there are now teenagers with DMD who have been using daily steroids from a much earlier age and so it might be expected that with these treatments available, young people with DMD could be living into their third decade and beyond. In Denmark, where those with DMD use steroids and ventilation in an optimal coordinated care programme, there are now more adults than children with the condition, and some are living into their third and fourth decades (Jeppeson ...

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