The genetic crystal ball: new answers and new questions for infants with neuromuscular disorders and respiratory failure

Wilkinson, Dominic; Moore, Gregory P.

doi:10.1136/archdischild-2019-318119

Cited by 1 publication

(2 citation statements)

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“…Specified populations include those with severe neurocognitive disabilities and neuromuscular diseases. For infants with spinal muscular atrophy type‐1, most studies were published before the era of disease‐modifying therapies, 53–57 with limited applicability nowadays 58 . Other populations described as requiring special consideration include children with a vegetative state, multisystem diseases, fully noninvasive ventilation dependent, wards of the state, and those able to participate in decision‐making themselves.…”

Section: Resultsmentioning

confidence: 99%

“…For infants with spinal muscular atrophy type-1, most studies were published before the era of disease-modifying therapies, [53][54][55][56][57] with limited applicability nowadays. 58 Other populations described as requiring special consideration include children T A B L E 1 Families-caregivers and healthcare providers' understanding of the pros and cons of tracheostomy that should be considered in decision-making conversations.…”

Section: Special Populationsmentioning

confidence: 99%

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Tracheostomy and long‐term invasive ventilation decision‐making in children: A scoping review

Mack,

Mailo,

Ofosu

et al. 2024

Pediatric Pulmonology

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An increasing number of children are surviving critical illnesses requiring tracheostomy/long‐term ventilation (LTV). This scoping review seeks to collate the available evidence on decision‐making for tracheostomy/LTV in children. Systematic searches of electronic databases and websites were conducted for articles and reports. Inclusion criteria included: (1) children 0–18 years old; (2) described use of tracheostomy or tracheostomy/LTV; and (3) information on recommendations for tracheostomy decision‐making or decision‐making experiences of family‐caregivers or health care providers. Articles not written in English were excluded. Of the 4463 records identified through database search and other methods, a total of 84 articles, 2 dissertations, 1 book chapter, 3 consensus statement/society guidelines, and 8 pieces of grey literature were included. Main thematic domains identified were: (1) legal and moral standards for decision‐making; (2) decision‐making models, roles of decision‐makers, and decisional aids towards a shared decision‐making model; (3) experiences and perspectives of decision‐makers; (4) health system and society considerations; and (5) conflict resolution and legal considerations. A high degree of uncertainty and complexity is involved in tracheostomy/LTV decision‐making. There is a need for a standardized decision‐support process that is consistent with a child's best interests and shared decision‐making. Strategies for optimizing communication and mechanism for managing disputes are needed.

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Section: Resultsmentioning

confidence: 99%