The importance of palliative care in Duchenne muscular dystrophy: a reflection
DOI:
https://doi.org/10.18203/2320-6012.ijrms20233731Keywords:
Muscular dystrophy, Palliative care, Quality of life, NeedsAbstract
Duchenne muscular dystrophy is a progressive disease involving early morbidity and mortality of children. Hence, it becomes essential to address the evolving issues comprehensively according to palliative care principles. Apart from physical issues, psychological, ethical and spiritual concerns affect the quality of life throughout the symptomatic period including the end of life. This case depicts the incomplete management of progressive physical issues as well as psychological, ethical and spiritual concerns of a ten-year-old child and his family. Lack of proper communication and inadequate knowledge about end-of-life care adversely impacts the quality of life of such patients. Understanding of Palliative Care principles helped to gain insight about the lacuna in clinical care of such patients. Knowledge and incorporation of Palliative Care principles is extremely important for any clinician dealing with progressive diseases like Duchenne Muscular Dystrophy and many more. Application of these principles has the potential to enhance the quality of life of patients and their caregivers significantly throughout the course of the disease.
References
Birnkrant DJ, Bushby K, Bann CM, Apkon SD, Blackwell A, Brumbaugh D, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management. Lancet Neurol. 2018;17(3):251-67.
Birnkrant DJ, Bushby K, Bann CM, Alman BA, Apkon SD, Blackwell A, et al. Diagnosis and management of Duchenne muscular dystrophy, part 2: respiratory, cardiac, bone health, and orthopaedic management. Lancet Neurol. 2018;17(4):347-61.
Birnkrant DJ, Bushby K, Bann CM, Apkon SD, Blackwell A, Colvin MK, et al. Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan. Lancet Neurol. 2018;17(5):445-55.
Bell M, Biesecker BB, Bodurtha J, Peay HL. Uncertainty, hope, and coping efficacy among mothers of children with Duchenne/Becker muscular dystrophy. Clin Genet. 2019;95(6):677-83.
Magliano L, Patalano M, Sagliocchi A, Scutifero M, Zaccaro A, D'Angelo MG, et al. I have got something positive out of this situation: psychological benefits of caregiving in relatives of young people with muscular dystrophy. J Neurol. 2014 ;261(1):188-95.
Pehler SR, Craft-Rosenberg M. Longing: the lived experience of spirituality in adolescents with Duchenne muscular dystrophy. J Pediatr Nurs. 2009; 24(6):481-94.
Nelson SF, Crosbie RH, Miceli MC, Spencer MJ. Emerging genetic therapies to treat Duchenne muscular dystrophy. Curr Opin Neurol. 2009;22(5): 532-8.
Lim KR, Maruyama R, Yokota T. Eteplirsen in the treatment of Duchenne muscular dystrophy. Drug Des Devel Ther. 2017;11:533-45.
Wang RT, Nelson SF. What can Duchenne Connect teach us about treating Duchenne muscular dystrophy? Curr Opin Neurol. 2015;28(5):535-41.
