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

Veerapandiyan, Aravindhan; Rao, Vamshi K.

doi:10.1002/mus.27544

Cited by 3 publications

(1 citation statement)

References 20 publications

(55 reference statements)

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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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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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Pharmacists are initiators in palliative care for patients with rare diseases

Dooms¹

2023

Orphanet J Rare Dis

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The World Health Organization supports early delivery of palliative care as it reduces unnecessary hospital admissions and the inappropriate use of health care services. A community pharmacist can play a key role in advocating timely access to palliative care. Medication reconciliation must alert them to start communicating with the patient and/or his relatives about refocusing treatment and care as part of palliative and terminal care. Pharmaceutical activities for these patients include dispensing of devices and medicinal products, compounding personalized medication and participating as a member of the Palliative Support Team. Most of the several thousands of rare diseases are caused by genetic defects and up to now have no cure and a late diagnosis.

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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 3 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

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

Pharmacists are initiators in palliative care for patients with rare diseases

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