Palliative care in Duchenne muscular dystrophy: Goals of care discussions and beyond

Veerapandiyan, Aravindhan; Rao, Vamshi K.

doi:10.1002/mus.27544

Cited by 4 publications

(1 citation statement)

References 20 publications

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“…Studies by Fayssoil et al found that in patients with DMD undergoing mechanical ventilation, accurate ventilator setting reduces the afterload of the left ventricle (LV). This improves LV function and also reduces pulmonary systolic pressure due to reduced pulmonary resistance [6,19].…”

Section: Discussionmentioning

confidence: 99%

Aggravation of Cardiovascular and Respiratory Decline in Advanced Duchenne Muscular Dystrophy Complicated by Dilated Cardiomyopathy – Case Study and Review of Literature

Welian-Polus,

Mazur,

Bielak

et al. 2024

J Educ Health Sport

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Introduction: Duchenne muscular dystrophy is a genetic X-linked recessive disorder. This condition is characterized by progressive loss of muscle tissue. Thus, it results in deterioration and inability to perform basic motor skills such as independent movement or breathing. Due to progressive muscle weakness, patients with advanced stages of DMD require mechanical ventilation, feeding, and rehabilitation. Furthermore, alterations in cardiac muscle lead to cardiomyopathy. Despite advanced supportive treatment, DMD is a fatal disease. Purpose: The aim of the paper is to present, using a case study description, the current standards of treatment for patients with Duchenne muscular dystrophy as well as the current state of knowledge and new discoveries regarding this medical condition. Material and methods The patient's medical records were analyzed and available literature in PubMed was reviewed to write this article using the keywords: „Duchenne muscular dystrophy”; „cardiomyopathy”; „mechanical ventilation”; „gene therapy”; Conclusions Early detection of respiratory and circulatory insufficiency improves the patient's quality of life. Many patients with an advanced stage of Duchenne muscular dystrophy need specialized treatment, for example, in the intensive care unit. Therefore there is an urgent need for new treatment methods, such as gene therapies, which can slow down or break the course of the disease. New discoveries and the implementation of new treatment standards can enhance the quality of life for patients and extend their lifespans.

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Section: Discussionmentioning

confidence: 99%

Aggravation of Cardiovascular and Respiratory Decline in Advanced Duchenne Muscular Dystrophy Complicated by Dilated Cardiomyopathy – Case Study and Review of Literature

Welian-Polus,

Mazur,

Bielak

et al. 2024

J Educ Health Sport

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Advance Directives for Adolescents and Young Adults Living With Neuromuscular Disease

Battista,

Baker,

Trimarchi

et al. 2024

J Hosp Palliat Nurs

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The literature shows that adolescents and young adults (AYAs) living with neuromuscular disease want to have discussions about goals of care and want them sooner. Conversations about goals of care and advance directives are not common practice in the neuromuscular clinic setting. This nurse practitioner–led project used a conversation tool as a 1-time intervention to guide conversations about participants' goals and wishes, comparing the number of participants with advance directives before and after the use of the intervention, and their satisfaction with having had a conversation about goals of care using this tool was measured. A total of 14 AYAs with genetically confirmed neuromuscular disease were enrolled in this project. There was a 92.9% increase in the number of AYAs with an advance directive demonstrating clinical meaningfulness. Most project participants were either quite a bit satisfied (21.4%) or very much satisfied (57.1%) with having used the intervention to discuss goals of care. This quality improvement project demonstrated that, if asked, AYAs with neuromuscular disease willingly agreed to discuss their goals of care and found satisfaction in using the intervention to complete an advance directive. Advanced Practice Registered Nurses should consider systematic processes to include these discussions as a part of routine practice.

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End of Life in Boys and Young Men With Duchenne Muscular Dystrophy – The Perspective of Dying Men and Their Families: A Systematic Review and Thematic Synthesis of Qualitative Evidence

Chrastina

Haroková

2023

Omega (Westport)

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Understanding the perceptions and experiences related to the end of life (EoL) of boys and men with Duchenne muscular dystrophy from their own and/or family perspective is limited based on the available qualitative empirical studies. This systematic review was done with a thematic synthesis of qualitative evidence according to the PRISMA Statement Guidelines and the SPIDER search tool. The review included empirical, qualitative, and relevant full-text studies published in 2000–2023 in the EBSCO Discovery Service, ISI Web of Science, Scopus, PubMed, and ProQuest databases. From o total of eight included qualitative studies, four main key themes were identified: “Being a parent/caregiver” – psychosocial aspects, needs, and experiences; “Communication about EoL with healthcare and other professionals” – positive experiences and personal shortcomings; “Discussions about…” – the issue of EoL, dying and death; and “End of life” – end-of-life care, planning and the need for palliative care.

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Palliative care in Duchenne muscular dystrophy: Goals of care discussions and beyond

Abstract: https://doi.org/10.1002/mus.27514

Cited by 4 publications

References 20 publications

Aggravation of Cardiovascular and Respiratory Decline in Advanced Duchenne Muscular Dystrophy Complicated by Dilated Cardiomyopathy – Case Study and Review of Literature

Aggravation of Cardiovascular and Respiratory Decline in Advanced Duchenne Muscular Dystrophy Complicated by Dilated Cardiomyopathy – Case Study and Review of Literature

Advance Directives for Adolescents and Young Adults Living With Neuromuscular Disease

End of Life in Boys and Young Men With Duchenne Muscular Dystrophy – The Perspective of Dying Men and Their Families: A Systematic Review and Thematic Synthesis of Qualitative Evidence

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