Interdisciplinary care of children with trisomy 13 and 18

Meaghann S Weaver¹, Venus Anderson², Jill Beck³, Jeffrey W Delaney², Cynthia Ellis^{4

5}, Scott Fletcher^{2

6}, James Hammel⁷, Suzanne Haney⁸, Andrew Macfadyen⁹, Bridget Norton⁹, Mary Rickard¹⁰, Jeffrey A Robinson², Ryan Sewell¹¹, Lois Starr^{5

12}, Nicole D Birge¹³

Affiliations

¹ Division of Palliative Care, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
² Division of Cardiology, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
³ Division of Oncology, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
⁴ Division of Developmental Pediatrics, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
⁵ Munroe-Meyer Institute for Genetics and Rehabilitation, Omaha, Nebraska, USA.
⁶ Division of Cardiology, Department of Pediatrics, Creighton University, Omaha, Nebraska, USA.
⁷ Division of Cardiothoracic Surgery, Department of Surgery, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
⁸ Division of Child Advocacy, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
⁹ Division of Critical Care, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
¹⁰ Division of Neurology, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
¹¹ Division of Otolaryngology, Department of Pediatrics, Children's Hospital and Medical Center and ENT Specialists PC, Omaha, Nebraska, USA.
¹² Division of Genetics, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
¹³ Division of Neonatology, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.

PMID: 33381915
DOI: 10.1002/ajmg.a.62051

Review

Interdisciplinary care of children with trisomy 13 and 18

Meaghann S Weaver et al. Am J Med Genet A. 2021 Mar.

. 2021 Mar;185(3):966-977.

doi: 10.1002/ajmg.a.62051. Epub 2020 Dec 31.

Authors

Affiliations

¹ Division of Palliative Care, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
² Division of Cardiology, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
³ Division of Oncology, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
⁴ Division of Developmental Pediatrics, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
⁵ Munroe-Meyer Institute for Genetics and Rehabilitation, Omaha, Nebraska, USA.
⁶ Division of Cardiology, Department of Pediatrics, Creighton University, Omaha, Nebraska, USA.
⁷ Division of Cardiothoracic Surgery, Department of Surgery, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
⁸ Division of Child Advocacy, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
⁹ Division of Critical Care, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
¹⁰ Division of Neurology, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
¹¹ Division of Otolaryngology, Department of Pediatrics, Children's Hospital and Medical Center and ENT Specialists PC, Omaha, Nebraska, USA.
¹² Division of Genetics, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
¹³ Division of Neonatology, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.

PMID: 33381915
DOI: 10.1002/ajmg.a.62051

Abstract

Children with trisomy 13 and 18 (previously deemed "incompatible with life") are living longer, warranting a comprehensive overview of their unique comorbidities and complex care needs. This Review Article provides a summation of the recent literature, informed by the study team's Interdisciplinary Trisomy Translational Program consisting of representatives from: cardiology, cardiothoracic surgery, neonatology, otolaryngology, intensive care, neurology, social work, chaplaincy, nursing, and palliative care. Medical interventions are discussed in the context of decisional-paradigms and whole-family considerations. The communication format, educational endeavors, and lessons learned from the study team's interdisciplinary care processes are shared with recognition of the potential for replication and implementation in other care settings.

Keywords: interdisciplinary care; palliative care; trisomy 13; trisomy 18.

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References

REFERENCES

1. Adams, D. M., & Winslade, W. J. (2011). Consensus, clinical decision making, and unsettled cases. The Journal of Clinical Ethics, 22(4), 310-327 Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/22324212
1. Allen Merritt, T., Catlin, A., Wool, C., Peverini, R., Goldstein, M., & Oshiro, B. (2012). Trisomy 18 and trisomy 13: Treatment and management decisions. NeoReviews, 13(1), e40-e48.
1. Alore, E. A., Fallon, S. C., Thomas, J. A., & Vogel, A. M. (2020). Outcomes after extracorporeal life support cannulation in pediatric patients with trisomy 13 and trisomy 18. The Journal of Surgical Research, 257, 260-266. https://doi.org/10.1016/j.jss.2020.07.036
1. Andrews, S. E., Downey, A. G., Showalter, D. S., Fitzgerald, H., Showalter, V. P., Carey, J. C., & Hulac, P. (2016). Shared decision making and the pathways approach in the prenatal and postnatal management of the trisomy 13 and trisomy 18 syndromes. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 172(3), 257-263. https://doi.org/10.1002/ajmg.c.31524
1. Baty, B. J., Blackburn, B. L., & Carey, J. C. (1994). Natural history of trisomy 18 and trisomy 13: I. Growth, physical assessment, medical histories, survival, and recurrence risk. American Journal of Medical Genetics, 49(2), 175-188. https://doi.org/10.1002/ajmg.1320490204

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Interdisciplinary care of children with trisomy 13 and 18

Affiliations

Interdisciplinary care of children with trisomy 13 and 18

Authors

Affiliations

Abstract

References

REFERENCES

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LinkOut - more resources

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Medical