Physician Perceptions on Quality of Life and Resuscitation Preferences for Extremely Early Newborns

 

 Buy Article Permissions and Reprints

Abstract

Objective The study aimed to explore physician views on whether extremely early newborns will have an acceptable quality of life (QOL), and if these views are associated with physician resuscitation preferences.

Study Design We performed a cross-sectional survey of neonatologists and maternal fetal medicine (MFM) attendings, fellows, and residents at four U.S. medical centers exploring physician views on future QOL of extremely early newborns and physician resuscitation preferences. Mixed-effects logistic regression models examined association of perceived QOL and resuscitation preferences when adjusting for specialty, level of training, gender, and experience with ex-premature infants.

Results A total of 254 of 544 (47%) physicians were responded. A minority of physicians had interacted with surviving extremely early newborns when they were ≥3 years old (23% of physicians in pediatrics/neonatology and 6% in obstetrics/MFM). The majority of physicians did not believe an extremely early newborn would have an acceptable QOL at the earliest gestational ages (11% at 22 and 23% at 23 weeks). The majority of physicians (73%) believed that having an extremely preterm infant would have negative effects on the family's QOL. Mixed-effects logistic regression models (odds ratio [OR], 95% confidence interval [CI]) revealed that physicians who believed infants would have an acceptable QOL were less likely to offer comfort care only at 22 (OR: 0.19, 95% CI: 0.05–0.65, p < 0.01) and 23 weeks (OR: 0.24, 95% CI: 0.07–0.78, p < 0.02). They were also more likely to offer active treatment only at 24 weeks (OR: 9.66, 95% CI: 2.56–38.87, p < 0.01) and 25 weeks (OR: 19.51, 95% CI: 3.33–126.72, p < 0.01).

Conclusion Physician views of extremely early newborns' future QOL correlated with self-reported resuscitation preferences. Residents and obstetric physicians reported more pessimistic views on QOL.

Key Points

• Views of QOL varied by specialty and level of training.

• Contact with former extremely early newborns was limited.

• QOL views were associated with preferred resuscitation practices.

^* These authors contributed equally to this work.

Publication History

Received: 03 March 2021

Accepted: 25 June 2021

Article published online:
05 August 2021

© 2021. Thieme. All rights reserved.

Thieme Medical Publishers, Inc.
333 Seventh Avenue, 18th Floor, New York, NY 10001, USA

• References

• 1 Wilkinson D, Verhagen E, Johansson S. Thresholds for resuscitation of extremely preterm infants in the UK, Sweden, and Netherlands. Pediatrics 2018; 142 (Suppl. 01) S574-S584
  CrossrefPubMedGoogle Scholar
• 2 Rysavy MA, Li L, Bell EF. et al; Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network. Between-hospital variation in treatment and outcomes in extremely preterm infants. N Engl J Med 2015; 372 (19) 1801-1811
  CrossrefPubMedGoogle Scholar
• 3 Arzuaga BH, Meadow W. National variability in neonatal resuscitation practices at the limit of viability. Am J Perinatol 2014; 31 (06) 521-528
  PubMedGoogle Scholar
• 4 Myrhaug HT, Brurberg KG, Hov L, Markestad T. Survival and impairment of extremely premature infants: a meta-analysis. Pediatrics 2019; 143 (02) e20180933
  CrossrefPubMedGoogle Scholar
• 5 Younge N, Goldstein RF, Bann CM. et al; Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network. Survival and neurodevelopmental outcomes among periviable infants. N Engl J Med 2017; 376 (07) 617-628
  CrossrefPubMedGoogle Scholar
• 6 Jarjour IT. Neurodevelopmental outcome after extreme prematurity: a review of the literature. Pediatr Neurol 2015; 52 (02) 143-152
  CrossrefPubMedGoogle Scholar
• 7 Diekema DS. Revisiting the best interest standard: uses and misuses. J Clin Ethics 2011; 22 (02) 128-133
  CrossrefPubMedGoogle Scholar
• 8 Batton DG. Committee on Fetus and Newborn. Clinical report--antenatal counseling regarding resuscitation at an extremely low gestational age. Pediatrics 2009; 124 (01) 422-427
  CrossrefPubMedGoogle Scholar
• 9 Cummings J. COMMITTEE ON FETUS AND NEWBORN. Antenatal counseling regarding resuscitation and intensive care before 25 weeks of gestation. Pediatrics 2015; 136 (03) 588-595
  CrossrefPubMedGoogle Scholar
• 10 Ecker JL, Kaimal A, Mercer BM. et al; American College of Obstetricians and Gynecologists, Society for Maternal-Fetal Medicine. Obstetric care consensus no. 6: periviable birth. Obstet Gynecol 2017; 130 (04) e187-e199
  CrossrefPubMedGoogle Scholar
• 11 Taylor GL, Joseph RM, Kuban KCK. et al. Changes in neurodevelopmental outcomes from age 2 to 10 years for children born extremely preterm. Pediatrics 2021; 147 (05) e2020001040
  CrossrefPubMedGoogle Scholar
• 12 Kilbride HW, Aylward GP, Carter B. What are we measuring as outcome? Looking beyond neurodevelopmental impairment. Clin Perinatol 2018; 45 (03) 467-484
  CrossrefPubMedGoogle Scholar
• 13 Saigal S, Tyson J. Measurement of quality of life of survivors of neonatal intensive care: critique and implications. Semin Perinatol 2008; 32 (01) 59-66
  CrossrefPubMedGoogle Scholar
• 14 Tucker Edmonds B, Hoffman SM, Laitano T. et al. Values clarification: eliciting the values that inform and influence parents' treatment decisions for periviable birth. Paediatr Perinat Epidemiol 2019; 1-9
  PubMedGoogle Scholar
• 15 Brady JM, Zhang H, Kirpalani H, DeMauro SB. Living with severe bronchopulmonary dysplasia-parental views of their child's quality of life. J Pediatr 2019; 207: 117-122
  CrossrefPubMedGoogle Scholar
• 16 Klassen AF, Lee SK, Raina P, Chan HWP, Matthew D, Brabyn D. Health Status and Health-Related Quality of Life in a Population Based Sample of Neonatal Intensive Care Unit Graduates. Pediatrics. 2004; 113 (3 I): 594-600
  CrossrefPubMedGoogle Scholar
• 17 Ketharanathan N, Lee W, de Mol AC. Health-related quality of life, emotional and behavioral problems in mild to moderate prematures at (pre-)school age. Early Hum Dev 2011; 87 (10) 705-709
  CrossrefPubMedGoogle Scholar
• 18 Zwicker JG, Harris SR. Quality of life of formerly preterm and very low birth weight infants from preschool age to adulthood: a systematic review. Pediatrics 2008; 121 (02) e366-e376
  CrossrefPubMedGoogle Scholar
• 19 Adams SY, Tucker R, Clark MA, Lechner BE. “Quality of life”: parent and neonatologist perspectives. J Perinatol 2020; 40 (12) 1809-1820
  CrossrefPubMedGoogle Scholar
• 20 Marino BS, Tomlinson RS, Drotar D. et al. Quality-of-life concerns differ among patients, parents, and medical providers in children and adolescents with congenital and acquired heart disease. Pediatrics 2009; 123 (04) e708-e715
  CrossrefPubMedGoogle Scholar
• 21 Saigal S, Stoskopf BL, Feeny D. et al. Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents. JAMA 1999; 281 (21) 1991-1997
  CrossrefPubMedGoogle Scholar
• 22 Wilkinson DJ. A life worth giving? The threshold for permissible withdrawal of life support from disabled newborn infants. Am J Bioeth 2011; 11 (02) 20-32
  CrossrefPubMedGoogle Scholar
• 23 Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 2009; 42 (02) 377-381
  Google Scholar
• 24 Fang X, Bai G, Windhorst DA. et al. Feasibility and validity of the Health Status Classification System-Preschool (HSCS-PS) in a large community sample: the Generation R study. BMJ Open 2018; 8 (12) e022449
  CrossrefPubMedGoogle Scholar
• 25 Saigal S, Rosenbaum P, Stoskopf B. et al. Development, reliability and validity of a new measure of overall health for pre-school children. Qual Life Res 2005; 14 (01) 243-257
  CrossrefPubMedGoogle Scholar
• 26 Varni JW, Limbers CA, Neighbors K. et al. The PedsQL™ Infant Scales: feasibility, internal consistency reliability, and validity in healthy and ill infants. Qual Life Res 2011; 20 (01) 45-55
  CrossrefPubMedGoogle Scholar
• 27 R Studio Team. R Studio: integrated development for R. Accessed 2020 at: https://www.rstudio.com/categories/integrated-development-environment/.
  PubMedGoogle Scholar
• 28 Boss RD, Lemmon ME, Arnold RM, Donohue PK. Communicating prognosis with parents of critically ill infants: direct observation of clinician behaviors. J Perinatol 2017; 37 (11) 1224-1229
  CrossrefPubMedGoogle Scholar
• 29 Patel D, Cohen ED, Barnato AE. The effect of framing on surrogate optimism bias: A simulation study. J Crit Care 2016; 32: 85-88
  CrossrefPubMedGoogle Scholar
• 30 Barnato AE, Arnold RM. The effect of emotion and physician communication behaviors on surrogates' life-sustaining treatment decisions: a randomized simulation experiment. Crit Care Med 2013; 41 (07) 1686-1691
  CrossrefPubMedGoogle Scholar
• 31 Malenka DJ, Baron JA, Johansen S, Wahrenberger JW, Ross JM. The framing effect of relative and absolute risk. J Gen Intern Med 1993; 8 (10) 543-548
  CrossrefPubMedGoogle Scholar
• 32 Kaempf JW, Tomlinson M, Arduza C. et al. Medical staff guidelines for periviability pregnancy counseling and medical treatment of extremely premature infants. Pediatrics 2006; 117 (01) 22-29
  CrossrefPubMedGoogle Scholar
• 33 Geurtzen R, Draaisma J, Hermens R. et al. Various experiences and preferences of Dutch parents in prenatal counseling in extreme prematurity. Patient Educ Couns 2018; 101 (12) 2179-2185
  CrossrefPubMedGoogle Scholar
• 34 Geurtzen R, van Heijst A, Draaisma J. et al. Professionals' preferences in prenatal counseling at the limits of viability: a nationwide qualitative Dutch study. Eur J Pediatr 2017; 176 (08) 1107-1119
  CrossrefPubMedGoogle Scholar
• 35 Prentice T, Janvier A, Gillam L, Davis PG. Moral distress within neonatal and paediatric intensive care units: a systematic review. Arch Dis Child 2016; 101 (08) 701-708
  CrossrefPubMedGoogle Scholar
• 36 Janvier A, Nadeau S, Deschênes M, Couture E, Barrington KJ. Moral distress in the neonatal intensive care unit: caregiver's experience. J Perinatol 2007; 27 (04) 203-208
  CrossrefPubMedGoogle Scholar
• 37 Boss RD, Geller G, Donohue PK. Conflicts in learning to care for critically ill newborns: “it makes me question my own morals”. J Bioeth Inq 2015; 12 (03) 437-448
  CrossrefPubMedGoogle Scholar
• 38 Larson CP, Dryden-Palmer KD, Gibbons C, Parshuram CS. Moral distress in PICU and neonatal ICU practitioners: a cross-sectional evaluation. Pediatr Crit Care Med 2017; 18 (08) e318-e326
  CrossrefPubMedGoogle Scholar
• 39 Fumis RRL, Junqueira Amarante GA, de Fátima Nascimento A, Vieira Junior JM. Moral distress and its contribution to the development of burnout syndrome among critical care providers. Ann Intensive Care 2017; 7 (01) 71
  CrossrefPubMedGoogle Scholar
• 40 Rushton CH, Schoonover-Shoffner K, Kennedy MS. Executive summary: transforming moral distress into moral resilience in nursing. Am J Nurs 2017; 117 (02) 52-56
  CrossrefPubMedGoogle Scholar
• 41 Prentice TM, Gillam L, Davis PG, Janvier A. The use and misuse of moral distress in neonatology. Semin Fetal Neonatal Med 2018; 23 (01) 39-43
  CrossrefPubMedGoogle Scholar
• 42 Tucker Edmonds B, McKenzie F, Panoch JE, Barnato AE, Frankel RM. Comparing obstetricians' and neonatologists' approaches to periviable counseling. J Perinatol 2015; 35 (05) 344-348
  CrossrefPubMedGoogle Scholar
• 43 Raju TNK, Mercer BM, Burchfield DJ, Joseph Jr GF. Periviable birth: executive summary of a joint workshop by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, Society for Maternal-Fetal Medicine, American Academy of Pediatrics, and American College of Obstetricians and Gynecologists. Obstet Gynecol 2014; 123 (05) 1083-1096
  CrossrefPubMedGoogle Scholar
• 44 Geurtzen R, Hogeveen M, Rajani AK. et al. Using simulation to study difficult clinical issues: prenatal counseling at the threshold of viability across American and Dutch cultures. Simul Healthc 2014; 9 (03) 167-173
  CrossrefPubMedGoogle Scholar
• 45 Kellerman SE, Herold J. Physician response to surveys. A review of the literature. Am J Prev Med 2001; 20 (01) 61-67
  CrossrefPubMedGoogle Scholar
• 46 Tyson JE, Parikh NA, Langer J, Green C, Higgins RD. National Institute of Child Health and Human Development Neonatal Research Network. Intensive care for extreme prematurity--moving beyond gestational age. N Engl J Med 2008; 358 (16) 1672-1681
  CrossrefPubMedGoogle Scholar
• 47 Tucker Edmonds B, McKenzie F, Farrow V, Raglan G, Schulkin J. A national survey of obstetricians' attitudes toward and practice of periviable intervention. J Perinatol 2014; 1-6
  PubMedGoogle Scholar
• 48 Christakis NA, Asch DA. Physician characteristics associated with decisions to withdraw life support. Am J Public Health 1995; 85 (03) 367-372
  CrossrefPubMedGoogle Scholar