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J Pediatr. 2017 Nov;190:118-123.e4. doi: 10.1016/j.jpeds.2017.05.056. Epub 2017 Jun 21.

Outcomes of Preterm Infants following Discussions about Withdrawal or Withholding of Life Support.

Collaborators (186)

Caplan MS14, Laptook AR15, Hensman AM15, Vieira E15, Little E15, Burke R15, Caskey M15, Johnson K15, Alksninis B15, Keszler ML15, Knoll AM15, Leach TM15, McGowan EC15, Watson VE15, Ventura S15, Walsh MC16, Fanaroff AA16, Hibbs AM16, Newman NS16, Payne AH16, Wilson-Costello DE16, Siner BS16, Bhola M16, Yalcinkaya G16, Friedman HG16, Truog WE17, Pallotto EK17, Kilbride HW17, Gauldin C17, Holmes A17, Johnson K17, Knutson A17, Schibler K18, Alexander B18, Grisby C18, Gratton TL18, Steichen JJ18, Fischer EE18, Jackson L18, Kirker K18, Muthig G18, Tepe S18, Yolton K18, Goldberg RN19, Cotten CM19, Goldstein RF19, Malcolm WF19, Ashley PL19, Fisher KA19, Finkle J19, Gustafson KE19, Laughon MM19, Bose CL19, Bernhardt J19, Bose G19, Wereszczak J19, Carlton DP20, Hale EC20, Adams-Chapman I20, Loggins Y20, Archer SW21, Sokol GM22, Poindexter BB22, Papile LA22, Wilson LD22, Herron DE22, Gunn S22, Smiley L22, Hines AC22, Nelin LD23, Jadcherla SR23, Sánchez PJ23, Luzader P23, Besner GE23, Parikh NA23, Wallace D24, Gantz MG24, Newman JE24, O'Donnell Auman J24, Crawford M24, Huitema CMP24, Zaterka-Baxter KM24, Van Meurs KP25, Stevenson DK25, Ball MB25, Hintz SR25, Proud MS25, Bentley B25, DeAnda ME25, DeBattista AM25, Earhart B25, Huffman LC25, Krueger CE25, Weiss HE25, Carlo WA26, Ambalavanan N26, Peralta-Carcelen M26, Collins MV26, Cosby SS26, Biasini FJ26, Johnston KC26, Patterson CS26, Phillips VA26, Whitley S26, Devaskar U27, Garg M27, Purdy IB27, Chanlaw T27, Geller R27, Ellsbury DL28, Colaizy TT28, Brumbaugh JE28, Widness JA28, Johnson KJ28, Walker JR28, Campbell DB28, Eastman DL28, Watterberg KL29, Lowe JR29, Fuller JF29, Ohls RK29, Lacy CB29, Duncan AF29, Schmidt B30, Chaudhary AS30, Abbasi S30, Mancini T30, Bernbaum JC30, Gerdes M30, Hurt H30, D'Angio CT31, Guillet R31, Lakshminrusimha S31, Reynolds AM31, Jensen RL31, Merzbach J31, Myers GJ31, Williams A31, Yost K31, Zorn W31, Wynn K31, Maffett D31, Prinzing D31, Hunn J31, Guilford S31, Osman F31, Rowan M31, Sacilowski MG31, Wadkins HIM31, Bowman M31, Kennedy KA32, Arldt-McAlister J32, Burson K32, Duncan AF32, Garcia C32, Harris BF32, John J32, Jones PM32, Lillie LM32, Martin K32, Martin SC32, McDavid GE32, Rodgers S32, Siddiki S32, Sperry D32, Pierce Tate PL32, Wright SL32, Wyckoff M33, Sánchez PJ33, Brion LP33, Vasil DM33, Chen L33, Heyne RJ33, Adams SS33, Madden LA33, Heyne E33, Guzman A33, Torres LE33, Boatman CT33, Pappas A34, Bara R34, Goldston LA34, Barks J34, Christensen M34, Wiggins S34, White D34.

Author information

1
Department of Pediatrics, The Children's Hospital of Philadelphia and The University of Pennsylvania, Philadelphia, PA. Electronic address: jamesjr@email.chop.edu.
2
Department of Pediatrics, The Children's Hospital of Philadelphia and The University of Pennsylvania, Philadelphia, PA.
3
Social, Statistical, and Environmental Sciences Unit, RTI International, Research Triangle Park, NC.
4
Emory University School of Medicine, Department of Pediatrics, Children's Healthcare of Atlanta, Atlanta, GA.
5
Department of Pediatrics, Wayne State University, Detroit, MI.
6
Department of Pediatrics, Duke University School of Medicine, Durham, NC.
7
Department of Pediatrics, Nationwide Children's Hospital, Columbus, OH.
8
Department of Pediatrics, Women and Infants Hospital, Brown University, Providence, RI.
9
Department of Pediatrics, University of Texas Medical School at Houston, Houston, TX.
10
Department of Pediatrics, University of Iowa, Iowa City, IA.
11
Perinatal Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
12
Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, MD.
13
Social, Statistical, and Environmental Sciences Unit, RTI International, Rockville, MD.
14
University of Chicago, Pritzker School of Medicine.
15
Alpert Medical School of Brown University and Women and Infants Hospital of Rhode Island.
16
Case Western Reserve University, Rainbow Babies and Children's Hospital.
17
Children's Mercy Hospital, University of Missouri Kansas City School of Medicine.
18
Cincinnati Children's Hospital Medical Center, University Hospital, Good Samaritan Hospital.
19
Duke University School of Medicine, University Hospital, University of North Carolina, Duke Regional Hospital.
20
Emory University, Children's Healthcare of Atlanta, Grady Memorial Hospital, Emory University Hospital Midtown.
21
Eunice Kennedy Shriver National Institute of Child Health and Human Development.
22
Indiana University, University Hospital, Methodist Hospital, Riley Hospital for Children, Wishard Health Services.
23
Nationwide Children's Hospital, Ohio State University Medical Center.
24
RTI International.
25
Stanford University, Lucile Packard Children's Hospital.
26
University of Alabama at Birmingham Health System, Children's Hospital of Alabama.
27
University of California - Los Angeles, Mattel Children's Hospital, Santa Monica Hospital, Los Robles Hospital and Medical Center, Olive View Medical Center.
28
University of Iowa and Mercy Medical Center.
29
University of New Mexico Health Sciences Center.
30
University of Pennsylvania, Hospital of the University of Pennsylvania, Pennsylvania Hospital, Children's Hospital of Philadelphia.
31
University of Rochester Medical Center, Golisano Children's Hospital, University of Buffalo Women's, Children's Hospital of Buffalo.
32
University of Texas Health Science Center at Houston Medical School, Children's Memorial Hermann Hospital.
33
University of Texas Southwestern Medical Center, Parkland Health & Hospital System, Children's Medical Center Dallas.
34
Wayne State University, Hutzel Women's Hospital, Children's Hospital of Michigan.

Abstract

OBJECTIVES:

To describe the frequency of postnatal discussions about withdrawal or withholding of life-sustaining therapy (WWLST), ensuing WWLST, and outcomes of infants surviving such discussions. We hypothesized that such survivors have poor outcomes.

STUDY DESIGN:

This retrospective review included registry data from 18 centers of the National Institute of Child Health and Human Development Neonatal Research Network. Infants born at 22-28 weeks of gestation who survived >12 hours during 2011-2013 were included. Regression analysis identified maternal and infant factors associated with WWLST discussions and factors predicting ensuing WWLST. In-hospital and 18- to 26-month outcomes were evaluated.

RESULTS:

WWLST discussions occurred in 529 (15.4%) of 3434 infants. These were more frequent at 22-24 weeks (27.0%) compared with 27-28 weeks of gestation (5.6%). Factors associated with WWLST discussion were male sex, gestational age (GA) of ≤24 weeks, birth weight small for GA, congenital malformations or syndromes, early onset sepsis, severe brain injury, and necrotizing enterocolitis. Rates of WWLST discussion varied by center (6.4%-29.9%) as did WWLST (5.2%-20.7%). Ensuing WWLST occurred in 406 patients; of these, 5 survived to discharge. Of the 123 infants for whom intensive care was continued, 58 (47%) survived to discharge. Survival after WWLST discussion was associated with higher rates of neonatal morbidities and neurodevelopmental impairment compared with babies for whom WWLST discussions did not occur. Significant predictors of ensuing WWLST were maternal age >25 years, necrotizing enterocolitis, and days on a ventilator.

CONCLUSIONS:

Wide center variations in WWLST discussions occur, especially at ≤24 weeks GA. Outcomes of infants surviving after WWLST discussions are poor.

TRIAL REGISTRATION:

ClinicalTrials.gov: NCT00063063.

KEYWORDS:

disability; ethics; newborn; palliative care; prognosis

PMID:
28647272
PMCID:
PMC5690862
DOI:
10.1016/j.jpeds.2017.05.056
[Indexed for MEDLINE]
Free PMC Article

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