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Parental Experience of Recruitment for Neonatal Clinical Trials

This work aims to better understand the experiences and needs of parents approached for research participation in the NICU setting. Findings from this work can inform interventions to support research teams and improve parental experience of recruitment.

Publications

  1. Weiss EM, Porter KM, Oslin E, Puia-Dumitrescu M, Donohue PK, Merhar SL, Stephens E, Mercer A, Wilfond BS. Experiences and preferences for learning about neonatal research: insights from parent interviews. J Perinatol. 2023 Nov 25. doi: 10.1038/s41372-023-01790-6. Epub ahead of print. PMID: 38001157.
  2. Guttmann KF, Li S, Wu YW, Juul SE, Wilfond BS, Weiss EM. Factors That Impact Hospital-Specific Enrollment Rates for a Neonatal Clinical Trial: An Analysis of the HEAL Study. Ethics Hum Res. 2023 Jan;45(1):29-38. doi: 10.1002/eahr.500154. PubMed PMID: 36691692; PubMed Central PMCID: PMC9969810.
  3. Nathe JM, Oskoui TT, Weiss EM. Parental Views of Facilitators and Barriers to Research Participation: Systematic Review. Pediatrics. 2023 Jan 1;151(1). doi: 10.1542/peds.2022-058067. PubMed PMID: 36477217; PubMed Central PMCID: PMC9808610.
  4. Weiss EM, Olszewski AE, Guttmann KF, Magnus BE, Li S, Shah AR, Juul SE, Wu YW, Ahmad KA, Bendel-Stenzel E, Isaza NA, Lampland AL, Mathur AM, Rao R, Riley D, Russell DG, Salih ZNI, Torr CB, Weitkamp JH, Anani UE, Chang T, Dudley J, Flibotte J, Havrilla EM, Kathen CM, O'Kane AC, Perez K, Stanley BJ, Wilfond BS, Shah SK. Parental Factors Associated With the Decision to Participate in a Neonatal Clinical Trial. JAMA Netw Open. 2021 Jan 4;4(1):e2032106. doi: 10.1001/jamanetworkopen.2020.32106. PubMed PMID: 33433595; PubMed Central PMCID: PMC7804922.
  5. Weiss EM, Guttmann KF, Olszewski AE, Magnus BE, Li S, Kim SYH, Shah AR, Juul SE, Wu YW, Ahmad KA, Bendel-Stenzel E, Isaza NA, Lampland AL, Mathur AM, Rao R, Riley D, Russell DG, Salih ZNI, Torr CB, Weitkamp JH, Anani UE, Chang T, Dudley J, Flibotte J, Havrilla EM, O'Kane AC, Perez K, Stanley BJ, Shah SK, Wilfond BS. Parental Enrollment Decision-Making for a Neonatal Clinical Trial. J Pediatr. 2021 Dec;239:143-149.e3. doi: 10.1016/j.jpeds.2021.08.014. Epub 2021 Aug 14. PubMed PMID: 34400207; PubMed Central PMCID: PMC8610170.

Relationship-Building in Pediatric Clinical Research

This work aims to identify gaps in the interactions between parents and research staff as well as develop, test, and evaluate potential interventions to improve these interactions.

Publications

  1. Kraft SA, Porter KM, Sullivan TR, Anderson EE, Garrison NA, Baker L, Smith JM, Weiss EM. Relationship building in pediatric research recruitment: Insights from qualitative interviews with research staff. J Clin Transl Sci. 2022;6(1):e138. doi: 10.1017/cts.2022.469. eCollection 2022. PubMed PMID: 36590359; PubMed Central PMCID: PMC9794958.
  2. Weiss EM, Porter KM, Sullivan TR, Sotelo Guerra LJ, Anderson EE, Garrison NA, Baker L, Smith JM, Kraft SA. Equity Concerns Across Pediatric Research Recruitment: An Analysis of Research Staff Interviews. Acad Pediatr. 2023 Jul 11;. doi: 10.1016/j.acap.2023.06.032. [Epub ahead of print] PubMed PMID: 37442368; NIHMSID:NIHMS1925690.
  3. Porter KM, Weiss EM, Kraft SA. Promoting Disclosure and Understanding in Informed Consent: Optimizing the Impact of the Common Rule "Key Information" Requirement. Am J Bioeth. 2021 May;21(5):70-72. doi: 10.1080/15265161.2021.1906996. PubMed PMID: 33945415; PubMed Central PMCID: PMC8600969.
  4. Guttmann KF, Wu YW, Juul SE, Weiss EM. Consent Related Challenges for Neonatal Clinical Trials. Am J Bioeth. 2020 Jun;20(5):38-40. doi: 10.1080/15265161.2020.1745940. PubMed PMID: 32364480.

Shared Decision-Making in Pediatrics

This work aims to describe parental decision-making preferences; create, refine, and test conceptual models of share decision-making in pediatrics; and create tools to evaluate shared decision-making in pediatric settings.

Publications

  1. Opel DJ, Vo HH, Dundas N, Spielvogle H, Mercer A, Wilfond BS, Clark J, Heike CL, Weiss EM, Bryan MA, Shah SK, McCarty CA, Robinson JD, Blumenthal-Barby J, Tilburt J. Validation of a Process for Shared Decision-Making in Pediatrics. Acad Pediatr. 2023 Nov-Dec;23(8):1588-1597. doi: 10.1016/j.acap.2023.01.007. Epub 2023 Jan 20. PubMed PMID: 36682451.
  2. Weiss EM, Clark JD, Heike CL, Rosenberg AR, Shah SK, Wilfond BS, Opel DJ. Gaps in the Implementation of Shared Decision-making: Illustrative Cases. Pediatrics. 2019 Mar;143(3). doi: 10.1542/peds.2018-3055. Epub 2019 Feb 5. PubMed PMID: 30824603.
  3. Weiss EM, Magnus BE, Coughlin K. Factors associated with decision-making preferences among parents of infants in neonatal intensive care. Acta Paediatr. 2019 May;108(5):967-968. doi: 10.1111/apa.14735. Epub 2019 Feb 20. PubMed PMID: 30715746.
  4. Weiss EM, Xie D, Cook N, Coughlin K, Joffe S. Characteristics Associated With Preferences for Parent-Centered Decision Making in Neonatal Intensive Care. JAMA Pediatr. 2018 May 1;172(5):461-468. doi: 10.1001/jamapediatrics.2017.5776. PubMed PMID: 29554176; PubMed Central PMCID: PMC5875325
  5. Weiss EM, Barg FK, Cook N, Black E, Joffe S. Parental Decision-Making Preferences in Neonatal Intensive Care. J Pediatr. 2016 Dec;179:36-41.e3. doi: 10.1016/j.jpeds.2016.08.030. Epub 2016 Sep 21. PubMed PMID: 27665039.
  6. Weiss EM, Kohn R, Madden V, Halpern S, Joffe S, Kerlin MP. Procedure-specific consent is the norm in United States intensive care units. Intensive Care Med. 2016 Oct;42(10):1637-1638. doi: 10.1007/s00134-016-4433-1. Epub 2016 Jul 14. PubMed PMID: 27416934; PubMed Central PMCID: PMC5035197.

Emerging Ethical Controversies in Neonatology

This work critically explores emerging issues at the intersection of neonatology and bioethics. Dr. Weiss serves as the chair of the Ethics and Equity Committee of NeoMIND-AI, which aims to promote effective, ethical, equitable use of AI within neonatology.

Publications

  1. Kukora SK, Mychaliska GB, Weiss EM. Ethical challenges in first-in-human trials of the artificial placenta and artificial womb: not all technologies are created equally, ethically. J Perinatol. 2023 Nov;43(11):1337-1342. doi: 10.1038/s41372-023-01713-5. Epub 2023 Jul 3. PMID: 37400494.
  2. Weiss EM, Kukora S, Barrington KJ. Use of composite NICU research outcomes for goals of care counselling creates ethical challenges. Acta Paediatr. 2021 Dec;110(12):3251-3254. doi: 10.1111/apa.16018. Epub 2021 Jul 14. PMID: 34214207.
  3. Miller KE, Coleman RD, Eisenberg L, Henriksen J, Lantos JD, Weiss EM. Unilateral Withdrawal of Life-sustaining Therapy in a Severely Impaired Child. Pediatrics. 2018 Nov;142(5):e20180131. doi: 10.1542/peds.2018-0131. Epub 2018 Oct 12. PMID: 30315121.
  4. Weiss EM, Fiester A. From "Longshot" to "Fantasy": Obligations to Pediatric Patients and Families When Last-Ditch Medical Efforts Fail. Am J Bioeth. 2018 Jan;18(1):3-11. doi: 10.1080/15265161.2017.1401157. PMID: 29313768.

Issues Around Clinical Uncertainty in Pediatrics

This work critically explores clinical uncertainty in pediatric settings, including the growing population of pediatric chronic critical illness and infants and children at end of life.

Publications

  1. Imai L, Gray MM, Kim BJH, Lyle ANJ, Bock A, Weiss EM. Clinician perception of care at the end of life in a quaternary neonatal intensive care unit. Front Pediatr. 2023 Jun 13;11:1197360. doi: 10.3389/fped.2023.1197360. PMID: 37384313; PMCID: PMC10293892.
  2. Bogetz JF, Weiss EM, Opel DJ. Use of Cognitive Shortcuts in Decision-making for Children With Severe Neurologic Impairment. Pediatrics. 2021 Mar;147(3):e20200930. doi: 10.1542/peds.2020-0930. Epub 2021 Feb 11. PMID: 33574161.
  3. Boss RD, Henderson CM, Weiss EM, Falck A, Madrigal V, Shapiro MC, Williams EP, Donohue PK; Pediatric Chronic Critical Illness Collaborative. The Changing Landscape in Pediatric Hospitals: A Multicenter Study of How Pediatric Chronic Critical Illness Impacts NICU Throughput. Am J Perinatol. 2022 Apr;39(6):646-651. doi: 10.1055/s-0040-1718572. Epub 2020 Oct 19. PMID: 33075841.
  4. Neubauer K, Williams EP, Donohue PK, Weiss EM, Lewis-Newby M, Boss RD. Diagnosis to death: family experiences of paediatric heart disease. Cardiol Young. 2020 Nov;30(11):1672-1678. doi: 10.1017/S1047951120002541. Epub 2020 Aug 24. PMID: 32829727.
  5. Krick JA, Weiss EM, Snyder A, Haldar S, Campelia GD, Opel DJ. Living with the Unknown: A Qualitative Study of Parental Experience of Prognostic Uncertainty in the Neonatal Intensive Care Unit. Am J Perinatol. 2021 Jul;38(8):821-827. doi: 10.1055/s-0039-3402722. Epub 2020 Jan 3. PMID: 31899927.
  6. Boss RD, Falck A, Goloff N, Hutton N, Miles A, Shapiro M, Weiss EM, Donohue PK; Pediatric Chronic Critical Illness Collaborative. Low prevalence of palliative care and ethics consultations for children with chronic critical illness. Acta Paediatr. 2018 Oct;107(10):1832-1833. doi: 10.1111/apa.14394. Epub 2018 May 30. PMID: 29751362.
  7. Weiss EM, Munson DA. Action and Uncertainty in Neonatal Intensive Care. Am J Bioeth. 2016 May;16(5):31-3. doi: 10.1080/15265161.2016.1159755. PMID: 27111365.
  8. Guillén Ú, Weiss EM, Munson D, Maton P, Jefferies A, Norman M, Naulaers G, Mendes J, Justo da Silva L, Zoban P, Hansen TW, Hallman M, Delivoria-Papadopoulos M, Hosono S, Albersheim SG, Williams C, Boyle E, Lui K, Darlow B, Kirpalani H. Guidelines for the Management of Extremely Premature Deliveries: A Systematic Review. Pediatrics. 2015 Aug;136(2):343-50. doi: 10.1542/peds.2015-0542. Epub 2015 Jul 13. PMID: 26169424.

Intersection of Bioethics, Pediatrics and Climate Change

This work aims to support research, education, advocacy, and clinical work at the intersection of bioethics, pediatrics, and climate change. Dr. Weiss is a founding member of the University of Washington Department of Pediatric's Climate Change CARE Committee and a member of its Climate Change Research sub-committee.

Publications

  1. Parnes, M. F., Bennett, M., Rao, M., MacDuffie, K. E., Zhang, A. Y., Grow, H. M., Weiss, E. M. (in press). The kids are not alright: The mental health toll of environmental injustice. American Journal of Bioethics.

Supporting Ethical Artificial Intelligence in Pediatrics

This work aims to support research, education, advocacy and clinical work at the intersection of bioethics, pediatrics and artificial intelligence. Dr. Weiss serves as the chair of the Ethics and Equity Committee of NeoMindAI, a national group of neonatologists working to support the ethical, reliable and effective use of AI.

Publications

  1. Sullivan BA, Beam K, Vesoulis ZA, Aziz KB, Husain AN, Knake LA, Moreira AG, Hooven TA, Weiss EM, Carr NR, El-Ferzli GT, Patel RM, Simek KA, Hernandez AJ, Barry JS, McAdams RM. Transforming neonatal care with artificial intelligence: challenges, ethical consideration, and opportunities. J Perinatol. 2023 Dec 15. doi: 10.1038/s41372-023-01848-5. Epub ahead of print. PMID: 38097685.

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