Psychosocial Management of the Patient With Duchenne Muscular Dystrophy

Abstract

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.

Cardiac Management of the Patient With Duchenne Muscular Dystrophy

“…(For additional details, see the psychosocial care specialty article that is part of this supplement. 66 ) End-of-life issues related to destination LVAD placement in pediatric and young adult patients, including the inevitable eventual withdrawal of support, require careful consideration and honest discussion before device placement. 67…”

Transition from Childhood to Adulthood in Patients with Duchenne Muscular Dystrophy

“…During the transition period, the issue of long-term care goals should be raised. Concerns that discussions about the progression of the disease not taking place early enough have been reported [ 13 ]. Adults with DMD are open to a discussion regarding topics such as death and dying (e.g., the nature and place of death; practical planning for funerals and wills; how they prefer to be comforted, supported, treated, and remembered).…”

“…There are still very few publications describing adult patients with DMD and their health problems related to the progression of the disease during the transition [ 13 , 14 , 15 ]. The current paper provides a comprehensive overview of special healthcare needs related to the transfer of a patient with DMD from child-oriented to adult-oriented healthcare by consulting the main libraries (Pubmed, Scopus, and Google Scholar).…”

Primary Care and Emergency Department Management of the Patient With Duchenne Muscular Dystrophy

“…For more details, see the "Psychosocial Management of the Patient With Duchenne Muscular Dystrophy" article that is part of this supplement. 10 The PCMH is a natural place for discussions of transition to autonomy to begin. The American Academy of Pediatrics recommends that discussions of transition begin at age 12 years.…”

“…28 For more details, see the article, "Psychosocial Management of the Patient With Duchenne Muscular Dystrophy, " that is part of this supplement. 10 Identification of hearing and vision impairment is important in this population because these problems are often correctable and can improve school and social performance. 29,30 Patients who use steroids are at risk for the development of cataracts, and appropriate screening should occur.…”