Development and pretesting of a decision-aid to use when counseling parents facing imminent extreme premature delivery

Journal of Pediatrics

Volumn 160, Issue 3, 2012, Pages 382-387

  Guillén, Úrsula ^a   Suh, Sanghee ^a   Munson, David ^a   Posencheg, Michael ^a   Truitt, Elissa ^a   Zupancic, John A F ^b   Gafni, Amiram ^c   Kirpalani, Haresh ^a,c  

^a CHILDREN S HOSPITAL OF PHILADELPHIA   (United States)

^b HARVARD MEDICAL SCHOOL   (United States)

^c MCMASTER UNIVERSITY   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; DELIVERY ROOM; FEMALE; GESTATION PERIOD; HUMAN; MALE; MEDICAL DECISION MAKING; PARENT COUNSELING; PREGNANCY COMPLICATION; PREGNANCY OUTCOME; PREMATURE LABOR; PRENATAL PERIOD; PRIORITY JOURNAL; QUALITATIVE RESEARCH; RESUSCITATION; REVIEW; SEMI STRUCTURED INTERVIEW; SURVIVAL RATE;

EID: 84857056378     PISSN: 00223476     EISSN: 10976833     Source Type: Journal    
DOI: 10.1016/j.jpeds.2011.08.070     Document Type: Article

References (32)

1. D.G. Batton The Committee on Fetus and Newborn Clinical Report: antenatal counseling regarding resuscitation at an extremely low gestational age Pediatrics 124 2009 422 427
2. H. MacDonald The Committee on Fetus and Newborn Perinatal care at the threshold of viability Pediatrics 110 2002 1024 1027 (Pubitemid 35266167)
3. Fetus and Newborn Committee Management of the woman with threatened birth of an infant of extremely low gestational age Can Med Assoc J 151 1994 547 551
4. D.L. Streiner, S. Saigal, E. Burrows, B. Stoskopf, and P. Rosenbaum Attitudes of parents and health care professionals toward active treatment of extremely premature infants Pediatrics 108 2001 152 157 (Pubitemid 32592019)
5. R.D. Boss, N. Hutton, L.J. Sulpar, A.M. West, and P.K. Donohue Values parents apply to decision-making regarding delivery room resuscitation for high-risk newborns Pediatrics 122 2008 583 589
6. H.T. Keenan, M.W. Doron, and B.A. Seyda Comparison of mothers' and counselors' perceptions of predelivery counseling for extremely premature infants Pediatrics 116 2005 104 111
7. J. Zupancic, H. Kirpalani, J. Barrett, S. Stewart, A. Gafni, and D. Streiner Characterising doctor-patient communication in counselling for impending preterm delivery Arch Dis Child Fetal Neonat Ed 87 2002 F113-F7
8. J.E. Tyson, N.A. Parikh, J. Langer, C. Green, R.D. Higgins National Institute of Child Health and Human Development Neonatal Research Network Intensive care for extreme prematurity: moving beyond gestational age N Engl J Med 358 2008 1672 1681 (Pubitemid 351549914)
9. J.W. Kaempf, M. Tomlinson, C. Arduza, S. Anderson, B. Campbell, and L.A. Ferguson Medical staff guidelines for periviability pregnancy counseling and medical treatment of extremely premature infants Pediatrics 117 2006 22 29 (Pubitemid 46050515)
10. J.W. Kaempf, M. Tomlinson, B. Campbell, L.A. Ferguson, and S. Stewart Counseling pregnant women who may deliver extremely premature infants: medical care guidelines, family choices, and neonatal outcomes Pediatrics 123 2009 1509 1515
11. A.M. O'Connor, D. Stacey, V. Entwistle, H. Llewellyn-Thomas, D. Rovner, and M. Holmes-Rovner Decision aids for people facing health treatment or screening decisions Cochrane Database Syst Rev 1 2003 (CD001431)
12. L.A. Siminoff, N.H. Gordon, P. Silverman, T. Budd, and P.M. Ravdin A decision aid to assist in adjuvant therapy choices for breast cancer Psycho-Oncology 15 2006 1001 1013 (Pubitemid 44762705)
13. A. Holbrook, R. Labiris, C.H. Goldsmith, K. Ota, S. Harb, and R.J. Sebaldt Influence of decision aids on patient preferences for anticoagulant therapy: a randomized trial Can Med Assoc J 176 2007 1583 1587 (Pubitemid 46868606)
14. T. Whelan, C. Sawka, M. Levine, A. Gafni, L. Reyno, and A. Willan Helping patients make informed choices: a randomized trial of a decision aid for adjuvant chemotherapy in lymph node-negative breast cancer J Natl Cancer Inst 95 2003 581 587 (Pubitemid 36553504)
15. K.S. Chiew, H. Shepherd, J. Vardy, M.H. Tattersall, P.N. Butow, and N.B. Leighl Development and evaluation of a decision aid for patients considering first-line chemotherapy for metastatic breast cancer Health Expect 11 2008 35 45 (Pubitemid 351239418)
16. M.N. Levine, A. Gafni, B. Markham, and D. MacFarlane A bedside decision instrument to elicit a patient's preference concerning adjuvant chemotherapy for breast cancer Ann Intern Med 117 1992 53 58
17. M. Man-Son-Hing, A.M. O'Connor, E. Drake, J. Biggs, V. Hum, and A. Laupaci The effect of qualitative s. quantitative presentation of probability estimates on patient decision-making: a randomized trial Health Expect 5 2002 246 255 (Pubitemid 34988190)
18. B.F. Crabtree, and W.L. Miller Doing Qualitative Research 2nd edition 1999 Sage Publications Thousand Oaks, CA
19. M.B. Miles, and A.M. Huberman Qualitative Data Analysis: A Sourcebook of New Methods 2nd edition 1994 Sage Publications Thousand Oaks, CA
20. C. Williams, J. Cairnie, V. Fines, C. Patey, K. Schwarzer, and J. Aylward Construction of a parent-derived questionnaire to measure end-of-life care after withdrawal of life-sustaining treatment in the neonatal intensive care unit Pediatrics 123 2009 e87 e95
21. E.A. Pector Views of bereaved multiple-birth parents on life support decisions, the dying process, and discussions surrounding death J Perinatol 24 2004 4 10 (Pubitemid 38159795)
22. H.E. McHaffie, A.J. Lyon, and R. Hume Deciding on treatment limitation for neonates: the parents' perspective Eur J Pediatr 160 2001 339 344 (Pubitemid 32449144)
23. M. Breslin, R.J. Mullan, and V.M. Montori The design of a decision aid about diabetes medications for the use during the consultation with patients with type 2 diabetes Patient Educ Counsel 73 2008 465 472
24. M. Man-Son-Hing, A. Laupacis, A.M. O'Connor, J. Biggs, E. Drake, and E. Yetisir A patient decision aid regarding antithrombotic therapy for stroke prevention in atrial fibrillation: a randomized controlled trial JAMA 282 1999 737 743 (Pubitemid 29404379)
25. U. Guillen, S. Demauro, L. Ma, J. Zupancic, E. Wang, and A. Gafni Survival rates in extremely low birthweight infants depend on the denominator: avoiding potential for bias by specifying denominators Am J Obstet Gynecol 2011 May 20 [Epub ahead of print]
26. U. Guillen, S. Demauro, L. Ma, J. Zupancic, R. Roberts, and B. Schmidt Relationship between attrition and neurodevelopmental impairment rates in extremely preterm infants at 18-24 months: a systematic review Arch Pediatr Adolesc Med 2011 In press
27. B. Schmidt, E. Asztalos, R.S. Roberts, C. Robertson, R.S. Sauve, and M. Whitfield Impact of bronchopulmonary dysplasia, brain injury, and severe retinopathy on the outcome of extremely low-birth-weight infants at 18 months: results from the Trial of Indomethacin Prophylaxis in Preterms JAMA 289 2003 1124 1129 (Pubitemid 37430326)
28. R.J. Mullan, V.M. Montori, N.D. Shah, T.J.H. Christianson, S.C. Bryant, and G. Guyatt The diabetes mellitus medication choice decision aid Arch Intern Med 169 2009 1560 1568
29. S. Suh, U. Guillen, and H. Kirpalani How Should Complex Data Be Presented to Help Patients Make Informed Health Decisions? 2011 Society for Pediatric Research Denver, CO
30. D.A. Paul, S. Epps, K.H. Leef, and J.L. Stefano Prenatal consultation with a neonatologist prior to preterm delivery J Perinatol 21 2001 431 437 (Pubitemid 32976175)
31. K. Kavanaugh, T. Moro, and T. Savage How nurses assist parents regarding life support decisions for extremely premature infants J Obstet Gynecol Neonat Nursing 39 2010 147 158
32. W. Kowalski, K.H. Leef, A. Mackley, M.L. Spear, and D.A. Paul Communicating with parents of premature infants: who is the informant? J Perinatol 26 2006 44 48 (Pubitemid 43135254)