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Field testing of decision coaching with a decision aid for parents facing extreme prematurity

Abstract

Objective:

The objective of this study is to assess and modify an existing decision aid and field-test decision coaching with the modified aid during consultations with parents facing potential delivery at 23 to 24 weeks gestation.

Study Design:

International Patient Decision Aid Standards instrument (IPDASi) scoring deficits, multi-stakeholder group feedback and α-testing guided modifications. Feasibility/acceptability were assessed. The Decisional Conflict Scale was used to measure participants’ decisional conflict before (T1) and immediately after (T2) the consultation.

Results:

IPDASi assessment of the existing aid (score 11/35) indicated it required updated data, more information and a palliative care description. Following modification, IPDASi score increased to 26/35. Twenty subjects (12 pregnancies) participated in field-testing; 15 completed all questionnaires. Most participants (89%) would definitely recommend this form of consultation. Decisional conflict scores decreased (P<0.001) between T1 (52±25) and T2 (10±16).

Conclusion:

Field testing demonstrated that consultations using the aid with decision coaching were feasible, reduced decisional conflict and may facilitate shared decision-making.

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References

  1. Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P et al. Shared decision making: a model for clinical practice. J Gen Intern Med 2012; 27 (10): 1361–1367.

    Article  PubMed  PubMed Central  Google Scholar 

  2. Jefferies AL, Kirpalani HM, Canadian Paediatric Society Fetus and Newborn Committee. Counselling and management for anticipated extremely preterm birth. Paediatr Child Health 2012; 17 (8): 443.

    Article  PubMed  PubMed Central  Google Scholar 

  3. Cummings J, Committee on Fetus and Newborn. Antenatal counseling regarding resuscitation and intensive care before 25 weeks of gestation. Pediatrics 2015; 136 (3): 588–595.

    Article  PubMed  Google Scholar 

  4. Stacey D, Kryworuchko J, Bennett C, Murray MA, Mullan S, Légaré F . Decision coaching to prepare patients for making health decision: a systematic review of decision coaching in trials of patient decision aids. Med Decis Making 2012; 32: E22–E33.

    Article  PubMed  Google Scholar 

  5. Stacey D, Légaré F, Col NF, Bennett CL, Barry MJ, Eden KB et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2014; (1): CD001431.

  6. Volk RJ, Llewellyn-Thomas H, Stacey D, Elwyn G . Ten years of the international patient decision aid standards collaboration: evolution of the core dimensions for assessing the quality of patient decision aids. BMC Med Inform Decis Mak 2013; 13 (S1).

  7. Feenstra B, Boland L, Lawson ML, Harrison D, Kryworuchko J, Leblanc M et al. Interventions to support children’s engagement in health-related decisions: a systematic review. BMC Pediatr 2014; 14: 109.

    Article  PubMed  PubMed Central  Google Scholar 

  8. Stacey D, Kryworuchko J, Belkora J, Davison BJ, Durand MA, Eden KB et al. Coaching and guidance with patient decision aids: a review of theoretical and empirical evidence. BMC Med Inform Decis Mak 2013; 13 (Suppl 2): S11.

    Article  PubMed  PubMed Central  Google Scholar 

  9. Guillén Ú, Suh S, Munson D, Posencheg M, Truitt E, Zupancic JA et al. Development and pretesting of a decision-aid to use when counselling parents facing imminent extreme premature delivery. J Pediatr 2012; 160 (3): 382–387.

    Article  PubMed  Google Scholar 

  10. Elwyn G, O’Connor AM, Bennett C, Newcombe RG, Politi M, Durand MA et al. Assessing the quality of decision support technologies using the International Patient Decision Aid Standards instrument (IPDASi). PLoS ONE 2009; 4 (3): e4705.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Joseph-Williams N, Newcombe R, Politi M, Durand MA, Sivell S, Stacey D et al. Toward minimum standards for certifying patient decision aids: a modified Delphi consensus process. Med Decis Making 2013; 34 (6): 699–710.

    Article  PubMed  Google Scholar 

  12. Staub K, Baardsnes J, Hebert N, Hebert M, Newell S, Pearce R . Our child is not just a gestational age. A first-hand account of what parents want and need to know before premature birth. Acta Paediatr 2014; 103 (10): 1035–1038.

    Article  PubMed  Google Scholar 

  13. Stokes TA, Watson KL, Boss RD . Teaching antenatal counseling skills to neonatal providers. Semin Perinatol 2014; 38 (1): 47–51.

    Article  PubMed  Google Scholar 

  14. Durand MA, Witt J, Joseph-Williams N, Newcombe RG, Politi MC, Sivell S et al. Minimum standards for the certification of patient decision support interventions: feasibility and application. Med Decis Making 2015; 98 (4): 462–468.

    Google Scholar 

  15. Lemyre B, Daboval T, Dunn S, Kekewich M, Jones G, Wang D et al. Shared decision making for infants born at the threshold of viability: a prognosis-based guideline. J Perinatol 2016; 36: 503–509.

    Article  CAS  PubMed  Google Scholar 

  16. O’Connor AM, Stacey D, Boland L The Ottawa Decision Support Tutorial (ODST). Ottawa, ON: Ottawa Hospital Research Institute (2015). Accessed 12 December 2015, available at https://decisionaid.ohri.ca/ODST.

  17. Coulter A, Stilwell D, Kryworuchko J, Mullen PD, Ng CJ, Weijden T . A systematic development process for patient decision aids. BMC Med Inform Decis Mak 2013; 13 (S2).

  18. Barry MJ, Fowler FJ Jr, Mulley AG Jr, Henderson JV Jr, Wennberg JE . Patient reactions to a program designed to facilitate patient participation in treatment decisions for benign prostatic hyperplasia. Med Care 1995; 33 (8): 771–782.

    Article  CAS  PubMed  Google Scholar 

  19. DeMarco TA, Peshkin BN, Mars BD, Tercyak KP . Patient satisfaction with cancer genetic counselling: a psychometric analysis of the genetic counselling satisfaction scale. J Genet Couns 2004; 13 (4): 293–304.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Herdman TH (ed). NANDA International Nursing Diagnoses: Definitions and Classification 2012-2014. Wiley-Blackwell: Oxford, England, 2012, pp 396–397.

  21. LeBlanc A, Kenny DA, O’Connor AM, Légaré F . Decisional conflict in patients and their physicians: a dyadic approach to shared decision making. Med Decis Making 2009; 29 (1): 61–68.

    Article  PubMed  Google Scholar 

  22. Li LC, Adam PM, Backman CL, Lineker S, Jones CA, Lacaille D et al. Proof-of-concept study of a web-based methotrexate decision aid for patients with rheumatoid arthritis. Arthritis Care Res (Hoboken) 2014; 66 (10): 1472–1481.

    Article  CAS  Google Scholar 

  23. Scariati P, Nelson L, Watson L, Bedrick S, Eden KB . Impact of a decision aid on reducing uncertainty: pilot study of women in their 40 s and screening mammography. BMC Med Inform Decis Mak 2015; 15: 89.

    Article  PubMed  PubMed Central  Google Scholar 

  24. O’Connor AM . User Manual – Decisional Conflict Scale 1993 [updated 2010]. Ottawa, ON: Ottawa Hospital Research Institute (2015). Accessed 12 December 2015, available at https://decisionaid.ohri.ca/docs/develop/User_Manuals/UM_Decisional_Conflict.pdf.

  25. O’Connor AM . User Manual – Measures of Decision/Choice Predisposition. Ottawa, ON: Ottawa Hospital Research Institute (2015). Accessed 12 December 2015, available at https://decisionaid.ohri.ca/docs/develop/User_Manuals/UM_ChoicePredisposition_Decision.pdf.

  26. 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 (2): 377–381.

    Article  PubMed  Google Scholar 

  27. Moore GP, Lemyre B, Barrowman N, Daboval T . Neurodevelopmental outcomes at 4 to 8 years of children born at 22 to 25 weeks’ gestational age: a meta-analysis. JAMA Pediatr 2013; 167 (10): 967–974.

    Article  PubMed  Google Scholar 

  28. Tyson JE, Parikh NA, Langer J, Green C, Higgins RD . Intensive care for extreme prematurity—moving beyond gestational age. N Engl J Med 2008; 358 (16): 1672–1681.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  29. Nguyen TP, Amon E, Al-Hosni M, Gavard JA, Gross G, Myles TD . "Early" versus "late" 23-week infant outcomes. Am J Obstet Gynecol 2012; 207 (3) 226 e1–e6.

    Article  Google Scholar 

  30. Jimenez JM, Tyson JE, Reisch JS . Clinical measures of gestational age in normal pregnancies. Obstet Gynecol 1983; 61 (4): 438–443.

    CAS  PubMed  Google Scholar 

  31. Gjessing HK, Skjaerven R, Wilcox AJ . Errors in gestational age: evidence of bleeding early in pregnancy. Am J Public Health 1999; 89 (2): 213–218.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  32. Arzuaga BH, Meadow W . National variability in neonatal resuscitation practices at the limit of viability. Am J Perinatol 2014; 31 (6): 521–528.

    PubMed  Google Scholar 

  33. Rysavy MA, Li L, Bell EF, Das A, Hintz SR, Stoll BJ et al. Between-hospital variation in treatment and outcomes in extremely preterm infants. N Engl J Med 2015; 372 (19): 1801–1811.

    Article  PubMed  PubMed Central  Google Scholar 

  34. Payot A, Gendron S, Lefebvre F, Doucet H . Deciding to resuscitate extremely premature babies: how do parents and neonatologists engage in the decision? Soc Sci Med 2007; 64 (7): 1487–1500.

    Article  PubMed  Google Scholar 

  35. Boss RD, Hutton N, Sulpar LJ, West AM, Donohue PK . Values parents apply to decision-making regarding delivery room resuscitation for high-risk newborns. Pediatrics 2008; 122 (3): 583–589.

    Article  PubMed  Google Scholar 

  36. Kavanaugh K, Moro TT, Savage T, Reyes M, Wydra M . Supporting parents’ decision making surrounding the anticipated birth of extremely premature infant. J Perinat Neonatal Nurs 2009; 23 (2): 159–170.

    Article  PubMed  PubMed Central  Google Scholar 

  37. Ubel PA . Medical facts versus value judgments – toward preference-sensitive guidelines. N Engl J Med 2015; 372: 2475–2477.

    Article  CAS  PubMed  Google Scholar 

  38. Daboval T, Shidler S . Ethical framework for shared decision making in the neonatal intensive care unit: Communicative ethics. Paediatr Child Health 2014; 19 (6): 302–304.

    Article  PubMed  PubMed Central  Google Scholar 

  39. Janvier A, Barrington K, Farlow B . Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology. Semin Perinatol 2014; 38 (1): 38–46.

    Article  PubMed  Google Scholar 

  40. Kakkilaya V, Groome LJ, Platt D, Kurepa D, Pramanik A, Caldito G et al. Use of a visual aid to improve counseling at the threshold of viability. Pediatrics 2011; 128 (6): e1511–e1519.

    Article  PubMed  Google Scholar 

  41. Légaré F, Ratte S, Stacey D, Kryworuchko J, Gravel K, Graham ID et al. Interventions for improving the adoption of shared decision making by healthcare professionals. Cochrane Database Syst Rev 2010; (5): CD006732.

  42. Linder SK, Swank PR, Vernon SW, Mullen PD, Morgan RO, Volk RJ . Validity of a low literacy version of the Decisional Conflict Scale. Patient Educ Couns 2011; 85 (3): 521–524.

    Article  PubMed  PubMed Central  Google Scholar 

  43. Shorten A, Shorten B, Keogh J, West S, Morris J . Making choices for childbirth: a randomized controlled trial of a decision-aid for informed birth after caesarean. Birth 2005; 32 (4): 252–261.

    Article  PubMed  Google Scholar 

  44. Kaempf J, Tomlinson MW, Tuohey J . Extremely premature birth and the choice of neonatal intensive care versus palliative comfort care: an 18-year single-center experience. J Perinatol 2015; 36: 190–195.

    Article  PubMed  Google Scholar 

  45. Meadow W, Lagatta A, Andrews B, Lantos J . The mathematics of morality for neonatal resuscitation. Clin Perinatol 2012; 39 (4): 941–956.

    Article  PubMed  PubMed Central  Google Scholar 

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Acknowledgements

We thank Dr Thierry Lacaze (Professor, University of Ottawa) for his critical review of the manuscript and Ms Danielle Robinson (Undergraduate student, University of Ottawa) for her assistance with data input.

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Correspondence to G P Moore.

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Supplementary Information accompanies the paper on the Journal of Perinatology website

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Moore, G., Lemyre, B., Daboval, T. et al. Field testing of decision coaching with a decision aid for parents facing extreme prematurity. J Perinatol 37, 728–734 (2017). https://doi.org/10.1038/jp.2017.29

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