To trach or not to trach? Ethical considerations for medically complex children during a home nursing crisis

Afolabi, Folashade; Liptzin, Deborah R.; Sharma, Preeti; Gelfand, Andrew; Baker, Christopher D.

doi:10.1002/ppul.26459

Cited by 3 publications

(1 citation statement)

References 11 publications

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“…9 Among families with the same inherited SFTPC variant, age of presentation varies, ranging from neonatal respiratory failure to adult pulmonary fibrosis. 10 SFTPC encodes a 191 or 197-amino acid precursor protein (pro SP-C), which undergoes proteolytic processing resulting in an extremely hydrophobic, 35-amino mature protein. The c.Gly97Cys and c.Cys189Tyr variants identified in these infants are located within the BRICHOS domain which mediates folding and processing of pro SP-C. [11][12][13] SFTPC variants within the BRICHOS domain result in retention of mutant-C in the endoplasmic reticulum and subsequent cellular stress, activation of the unfolded protein response, AEC2 apoptosis, increased cytokine production, macrophage recruitment, polycellular alveolitis, and fibrosis.…”

Section: Discussionmentioning

confidence: 99%

Noninvasive management of infants with SFTPC pathogenic variants

Liptzin,

McGraw,

Stidham

et al. 2023

Pediatric Pulmonology

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Section: Discussionmentioning

confidence: 99%

Noninvasive management of infants with SFTPC pathogenic variants

Liptzin,

McGraw,

Stidham

et al. 2023

Pediatric Pulmonology

Self Cite

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Caregiver education before hospital discharge for children on home‐invasive mechanical ventilation

Zirek,

Çobanoğlu

2023

Pediatric Pulmonology

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Children on home invasive mechanical ventilation necessitate specialized equipment, continuous monitoring, and multidisciplinary care. Transitioning these children from hospital to home care is complex, demanding careful planning. Guidelines and observational studies emphasize the importance of a standardized, comprehensive, and staged educational approach for caregiver education in discharge planning, yet program variations persist, lacking standardized checklists. This review aims to offer insights into crucial factors for a successful transition from hospital to home care for children using home‐invasive mechanical ventilation while also developing comprehensive caregiver checklists to ensure high‐quality care, taking into account families' socioeconomic status.

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To Trach or Not To Trach: Long-term Tracheostomy Outcomes in Infants with BPD

Kielt,

Levin

2023

NeoReviews

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See Bonus NeoBriefs videos and downloadable teaching slides Infants born preterm who are diagnosed with bronchopulmonary dysplasia (BPD) demonstrate a wide spectrum of illness severity. For infants with the most severe forms of BPD, safe discharge from the hospital may only be possible by providing long-term ventilation via a surgically placed tracheostomy. Though tracheostomy placement in infants with BPD is infrequent, recent reports suggest that rates of tracheostomy placement are increasing in this population. Even though there are known respiratory and neurodevelopmental risks associated with tracheostomy placement, no evidence-based criteria or consensus clinical practice guidelines exist to inform tracheostomy placement in this growing and vulnerable population. An incomplete knowledge of long-term post-tracheostomy outcomes in infants with BPD may unduly bias medical decision-making and family counseling regarding tracheostomy placement. This review aims to summarize our current knowledge of the epidemiology and long-term outcomes of tracheostomy placement in infants with BPD to provide a family-centered framework for tracheostomy counseling.

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To trach or not to trach? Ethical considerations for medically complex children during a home nursing crisis

Cited by 3 publications

References 11 publications

Noninvasive management of infants with SFTPC pathogenic variants

Noninvasive management of infants with SFTPC pathogenic variants

Caregiver education before hospital discharge for children on home‐invasive mechanical ventilation

To Trach or Not To Trach: Long-term Tracheostomy Outcomes in Infants with BPD

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