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Validation of a Process for Shared Decision-Making in Pediatrics

Published:January 19, 2023DOI:https://doi.org/10.1016/j.acap.2023.01.007

      Abstract

      Objective

      We sought to confirm, refute, or modify a 4-step process for implementing shared decision-making (SDM) in pediatrics that involves determining 1) if the decision includes >1 medically reasonable option; 2) if one option has a favorable medical benefit-burden ratio compared to other options; and 3) parents' preferences regarding the options; then 4) calibrating the SDM approach based on other relevant decision characteristics.

      Methods

      We videotaped a purposive sample of pediatric inpatient and outpatient encounters at a single US children's hospital. Clinicians from 7 clinical services (craniofacial, neonatology, oncology, pulmonary, pediatric intensive care, hospital medicine, and sports medicine) were eligible. English-speaking parents of children who participated in inpatient family care conferences or outpatient problem-oriented encounters with participating clinicians were eligible. We conducted individual post-encounter interviews with clinician and parent participants utilizing video-stimulated recall to facilitate reflection of decision-making that occurred during the encounter. We utilized direct content analysis with open coding of interview transcripts to determine the salience of the 4-step SDM process and identify themes that confirmed, refuted, or modified this process.

      Results

      We videotaped 30 encounters and conducted 53 interviews. We found that clinicians' and parents' experiences of decision-making confirmed each SDM step. However, there was variation in the interpretation of each step and a need for flexibility in implementing the process depending on specific decisional contexts.

      Conclusions

      The 4-step SDM process for pediatrics appears to be salient and may benefit from further guidance about the interpretation of each step and contextual factors that support a modified approach.

      Keywords

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      References

        • Spatz ES
        • Krumholz HM
        • Moulton BW.
        Prime Time for Shared Decision Making.
        JAMA. 2017; 317: 1309-1310
        • Aronson PL
        • Fraenkel L.
        Is Shared Decision-making the Right Approach for Febrile Infants?.
        Pediatrics. 2017; 140
        • Opel DJ.
        A Push for Progress With Shared Decision-making in Pediatrics.
        Pediatrics. 2017; 139
        • Shay LA
        • Lafata JE.
        Where is the evidence? A systematic review of shared decision making and patient outcomes.
        Medical decision making: an international journal of the Society for Medical Decision Making. 2015; 35: 114-131
        • Elwyn G
        • Frosch D
        • Thomson R
        • et al.
        Shared decision making: a model for clinical practice.
        Journal of general internal medicine. 2012; 27: 1361-1367
        • Charles C
        • Gafni A
        • Whelan T.
        Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango).
        Social science & medicine (1982). 1997; 44: 681-692
        • Montori VM
        • Gafni A
        • Charles C.
        A shared treatment decision-making approach between patients with chronic conditions and their clinicians: the case of diabetes.
        Health expectations: an international journal of public participation in health care and health policy. 2006; 9: 25-36
        • Muller-Engelmann M
        • Keller H
        • Donner-Banzhoff N
        • Krones T.
        Shared decision making in medicine: the influence of situational treatment factors.
        Patient education and counseling. 2011; 82: 240-246
        • Kaplan RM.
        Shared medical decision making. A new tool for preventive medicine.
        American journal of preventive medicine. 2004; 26: 81-83
        • Keirns CC
        • Goold SD.
        Patient-centered care and preference-sensitive decision making.
        JAMA. 2009; 302: 1805-1806
        • Malone H
        • Biggar S
        • Javadpour S
        • Edworthy Z
        • Sheaf G
        • Coyne I.
        Interventions for promoting participation in shared decision-making for children and adolescents with cystic fibrosis.
        Cochrane Database Syst Rev. 2019; 5CD012578
        • Weiss EM
        • Clark JD
        • Heike CL
        • et al.
        Gaps in the Implementation of Shared Decision-making: Illustrative Cases.
        Pediatrics. 2019; 143
        • Fiks AG
        • Jimenez ME.
        The promise of shared decision-making in paediatrics.
        Acta paediatrica. 2010; 99: 1464-1466
        • Adams RC
        • Levy SE
        Council On Children With D. Shared Decision-Making and Children With Disabilities: Pathways to Consensus.
        Pediatrics. 2017; 139
        • Wyatt KD
        • List B
        • Brinkman WB
        • et al.
        Shared Decision Making in Pediatrics: A Systematic Review and Meta-analysis.
        Acad Pediatr. 2015; 15: 573-583
        • Aronson PL
        • Shapiro ED
        • Niccolai LM
        • Fraenkel L.
        Shared Decision-Making with Parents of Acutely Ill Children: A Narrative Review.
        Acad Pediatr. 2018; 18: 3-7
        • Robertson EG
        • Cohen J
        • Signorelli C
        • Grant DM
        • Fardell JE
        • Wakefield CE.
        What instruments should we use to assess paediatric decision-making interventions? A narrative review.
        J Child Health Care. 2020; 24: 458-472
        • Valentine KD
        • Lipstein EA
        • Vo H
        • Cosenza C
        • Barry MJ
        • Sepucha K.
        Pediatric Caregiver Version of the Shared Decision Making Process Scale: Validity and Reliability for ADHD Treatment Decisions.
        Acad Pediatr. 2022;
        • Opel DJ.
        A 4-Step Framework for Shared Decision-making in Pediatrics.
        Pediatrics. 2018; 142: S149-S156
        • Wirtz V
        • Cribb A
        • Barber N.
        Patient-doctor decision-making about treatment within the consultation–a critical analysis of models.
        Social science & medicine. 2006; 62: 116-124
        • Whitney SN.
        A new model of medical decisions: exploring the limits of shared decision making.
        Med Decis Making. 2003; 23: 275-280
        • Sandman L
        • Munthe C.
        Shared decision making, paternalism and patient choice.
        Health Care Anal. 2010; 18: 60-84
        • Murray E
        • Charles C
        • Gafni A.
        Shared decision-making in primary care: tailoring the Charles et al. model to fit the context of general practice.
        Patient education and counseling. 2006; 62: 205-211
        • Kon AA.
        The shared decision-making continuum.
        Jama. 2010; 304: 903-904
        • Gwyn R
        • Elwyn G.
        When is a shared decision not (quite) a shared decision? Negotiating preferences in a general practice encounter.
        Social science & medicine (1982). 1999; 49: 437-447
        • Roethlisberger F
        • Dickson W
        Management and the Worker.
        Harvard University Press, Cambridge, MA1939
        • Boss RD
        • Donohue PK
        • Larson SM
        • Arnold RM
        • Roter DL.
        Family Conferences in the Neonatal ICU: Observation of Communication Dynamics and Contributions.
        Pediatr Crit Care Med. 2016; 17: 223-230
        • Fox D
        • Brittan M
        • Stille C.
        The Pediatric Inpatient Family Care Conference: a proposed structure toward shared decision-making.
        Hosp Pediatr. 2014; 4: 305-310
        • Paskins Z
        • McHugh G
        • Hassell AB.
        Getting under the skin of the primary care consultation using video stimulated recall: a systematic review.
        BMC Med Res Methodol. 2014; 14: 101
        • Henry SG
        • Fetters MD.
        Video elicitation interviews: a qualitative research method for investigating physician-patient interactions.
        Ann Fam Med. 2012; 10: 118-125
        • Lipstein EA
        • Dodds CM
        • Lovell DJ
        • Denson LA
        • Britto MT.
        Making decisions about chronic disease treatment: a comparison of parents and their adolescent children.
        Health Expect. 2016; 19: 716-726
        • Lipstein EA
        • Brinkman WB
        • Britto MT.
        What is known about parents' treatment decisions? A narrative review of pediatric decision making.
        Medical decision making: an international journal of the Society for Medical Decision Making. 2012; 32: 246-258
        • Smith MA
        • Clayman ML
        • Frader J
        • et al.
        A Descriptive Study of Decision-Making Conversations during Pediatric Intensive Care Unit Family Conferences.
        J Palliat Med. 2018; 21: 1290-1299
        • Mayring P.
        Qualitative Content Analysis.
        Forum: Qualitative Social Research. 2000; 1
        • Bomhof-Roordink H
        • Gartner FR
        • Stiggelbout AM
        • Pieterse AH.
        Key components of shared decision making models: a systematic review.
        BMJ Open. 2019; 9e031763
        • Makoul G
        • Clayman ML.
        An integrative model of shared decision making in medical encounters.
        Patient education and counseling. 2006; 60: 301-312
        • Burla L
        • Knierim B
        • Barth J
        • Liewald K
        • Duetz M
        • Abel T.
        From text to codings: intercoder reliability assessment in qualitative content analysis.
        Nursing research. 2008; 57: 113-117
        • Bernard HR.
        Research methods in anthropology: qualitative and quantitative methods.
        3rd ed. AltaMira Press, Walnut Creek, CA2002
        • Eaton SM
        • Clark JD
        • Cummings CL
        • et al.
        Pediatric Shared Decision-Making for Simple and Complex Decisions: Findings From a Delphi Panel.
        Pediatrics. 2022; 150
        • Epstein RM
        • Peters E.
        Beyond information: exploring patients' preferences.
        JAMA. 2009; 302: 195-197
        • Valentine KD
        • Vo H
        • Fowler Jr., FJ
        • Brodney S
        • Barry MJ
        • Sepucha KR
        Development and Evaluation of the Shared Decision Making Process Scale: A Short Patient-Reported Measure.
        Medical decision making: an international journal of the Society for Medical Decision Making. 2021; 41: 108-119
        • American Academy of Pediatrics Committee on Bioethics
        Committee on Genetics, and, the American College of Medical Genetics, and Genomics Social, Ethical, and Legal Issues Committee. Ethical and policy issues in genetic testing and screening of children.
        Pediatrics. 2013; 131: 620-622
        • Diekema DS.
        Parental refusals of medical treatment: the harm principle as threshold for state intervention.
        Theoretical medicine and bioethics. 2004; 25: 243-264
        • Themessl-Huber M
        • Humphris G
        • Dowell J
        • Macgillivray S
        • Rushmer R
        • Williams B.
        Audio-visual recording of patient-GP consultations for research purposes: a literature review on recruiting rates and strategies.
        Patient education and counseling. 2008; 71: 157-168