FV 871. Pediatric Palliative Care of Duchenne Muscular Dystrophy in Germany

Janisch, Maria; Nolte-Buchholtz, Silke; Hagen, Maja von der

doi:10.1055/s-0038-1675922

Cited by 2 publications

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“…Easing the emotional challenges surrounding this discussion could be of great support for the parents of children with DMD. At par with the earlier study findings,[ 5 15 ] current study suggests introducing palliative care services early in the disease trajectory, to ensure optimal care for children with DMD, especially during the terminal stage.…”

Section: Discussionsupporting

confidence: 69%

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Palliative care in duchenne muscular dystrophy: A study on parents' understanding

Sadasivan¹,

Warrier²,

Polavarapu³

et al. 2021

Indian J Palliat Care

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Introduction: Duchene muscular dystrophy (DMD) is a neuromuscular disease of childhood, which has clear progression. The international standardized care guidelines for DMD suggest that palliative care is essential for the affected children. Objective: To explore the parent's understanding of palliative care services available for children with DMD and the challenges faced by them in utilizing the same. Methods: A cross-sectional qualitative exploratory study was conducted among six families of boys diagnosed with DMD. A semi-structured interview guide with prompts was used to conduct in-depth interviews which lasted for an average of 1 h. Thematic analysis was done to identify the pattern or themes. Results: The major themes identified were “palliative care, living with DMD, Awareness about palliative care services and challenges.” Awareness about palliative care services is the dominant theme identified as influencing rest of the experiences narrated by the parents of children with DMD. Discussion: Integration of palliative care services from an early stage of the illness can help the child to make transition from one stage to another stage of the illness. To ensure the utilization of the available palliative care services, there is a need to create awareness about it among the general public. Conclusion: Introducing the concept of palliation of symptoms and ensuring quality of life of the child with DMD by accessing the available services can aid the parents to reach out for help for their child.

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Section: Discussionsupporting

confidence: 69%

“…[ 4 ] The condition requires highly specialized care, especially during the later stage. [ 5 ] Treatment decisions can become complicated if the patient and the family are not made aware of the condition, possible difficulties and the help available.…”

Section: Introductionmentioning

confidence: 99%

Palliative care in duchenne muscular dystrophy: A study on parents' understanding

Sadasivan¹,

Warrier²,

Polavarapu³

et al. 2021

Indian J Palliat Care

View full text Add to dashboard Cite

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Duchenne Muscular Dystrophy: Modern Approaches in Patient Management

Anisimova,

Artemyeva,

Belousova

et al. 2023

Pediatr. farmakol.

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Duchenne muscular dystrophy is one of the most common forms of childhood muscular dystrophies. Its incidence is 1 in 3.5–6 thousand newborn boys according to various sources. The disease is caused by the mutation in the DMD gene coding the dystrophin protein, it leads to the dystrophin absence or malfunction. The disease is characterized by proximal muscle weakness and gastrocnemius muscles pseudohypertrophy. In average, patients lose the ability to walk by themselves by the age of 11 and become nonambulatory. The authors have present modern epidemiological data and etiopathogenesis features of Duchenne muscular dystrophy, and have described clinical signs of different disease stages. The algorithm and key points of differential diagnosis are indicated. Special attention was given to the patients’ management: pathogenetic treatment and rehabilitation of pediatric patients.

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FV 871. Pediatric Palliative Care of Duchenne Muscular Dystrophy in Germany

Cited by 2 publications

References 0 publications

Palliative care in duchenne muscular dystrophy: A study on parents' understanding

Palliative care in duchenne muscular dystrophy: A study on parents' understanding

Duchenne Muscular Dystrophy: Modern Approaches in Patient Management

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