Debopam Samanta1, Adam P Ostendorf2, Rani Singh3, Satyanarayana Gedela4,5, Vimala Elumalai6, Megan Leigh Hoyt6, M Scott Perry7, Luca Bartolini8, Geoffrey M Curran9. 1. Neurology Division, Department of Pediatrics, University of Arkansas for Medical Sciences, Little Rock, AR, USA. 2. Division of Neurology, Department of Pediatrics, The Ohio State University and Nationwide Children's Hospital, Columbus, OH, USA. 3. Department of Pediatrics, Atrium Health/Levine Children's Hospital, Concord, NC, USA. 4. Department of Pediatrics, Emory University College of Medicine, Atlanta, GA, USA. 5. Children's Healthcare of Atlanta, Atlanta, GA, USA. 6. Division of Neurology, 14423Arkansas Children's Hospital, Little Rock, AR, USA. 7. Justin Neurosciences Center, 14488Cook Children's Medical Center, Fort Worth, TX, USA. 8. Department of Pediatrics, 12321The Warren Alpert Medical School of Brown University, Providence, RI, USA. 9. College of Pharmacy, 12215University of Arkansas for Medical Sciences, Little Rock, AR, USA.
Abstract
Objective: To qualitatively explore the approach of pediatric epilepsy providers when counseling regarding surgical options for epilepsy, presenting risks and benefits of surgery, overcoming resistance to surgery, and fostering shared decision making with patients and families. Methods: We conducted in-depth interviews with 11 academic clinicians (5- neurologists, 5- epileptologists, 1- neurosurgeon) from a Level 4 pediatric epilepsy center to explore how physicians communicate and pursue surgical decision-making. Results: A blended inductive-deductive analysis revealed three key themes (with subthemes) of presurgical discussions: (1) Candidate selection and initial discussion about epilepsy surgery (neurologists compared to epileptologists, the timing of the discussion, reluctant families) (2) Detailed individualized counseling about epilepsy surgery (shared decision-making [enablers and barriers] and risk-benefit analysis [balancing risks and benefits, statistical benefit estimation, discussion about SUDEP, prognostication about cognitive and behavioral outcomes, risks of surgery]) (3) Tools to improve decision-making (educational interventions for patients and families and provider- and organization-specific interventions). Significance: Presurgical discussions lack uniformity among physicians who treat epilepsy. Despite general interest in collaborative decision-making, experts raised concern about lack of exposure to communication training and clinical tools for optimizing decision-making, a high number of families who do not feel equipped to share the decision making leaving the decision-making entirely to the physician, and paucity of practical resources for individualized risk-benefit counseling. Clinical practice guidelines should be developed to reduce existing practice variations in presurgical counseling. Further consensus is needed about when and how to initiate the conversation about epilepsy surgery, essential components of the discussion, and the utility of various tools to improve the utilization of epilepsy surgery.
Objective: To qualitatively explore the approach of pediatric epilepsy providers when counseling regarding surgical options for epilepsy, presenting risks and benefits of surgery, overcoming resistance to surgery, and fostering shared decision making with patients and families. Methods: We conducted in-depth interviews with 11 academic clinicians (5- neurologists, 5- epileptologists, 1- neurosurgeon) from a Level 4 pediatric epilepsy center to explore how physicians communicate and pursue surgical decision-making. Results: A blended inductive-deductive analysis revealed three key themes (with subthemes) of presurgical discussions: (1) Candidate selection and initial discussion about epilepsy surgery (neurologists compared to epileptologists, the timing of the discussion, reluctant families) (2) Detailed individualized counseling about epilepsy surgery (shared decision-making [enablers and barriers] and risk-benefit analysis [balancing risks and benefits, statistical benefit estimation, discussion about SUDEP, prognostication about cognitive and behavioral outcomes, risks of surgery]) (3) Tools to improve decision-making (educational interventions for patients and families and provider- and organization-specific interventions). Significance: Presurgical discussions lack uniformity among physicians who treat epilepsy. Despite general interest in collaborative decision-making, experts raised concern about lack of exposure to communication training and clinical tools for optimizing decision-making, a high number of families who do not feel equipped to share the decision making leaving the decision-making entirely to the physician, and paucity of practical resources for individualized risk-benefit counseling. Clinical practice guidelines should be developed to reduce existing practice variations in presurgical counseling. Further consensus is needed about when and how to initiate the conversation about epilepsy surgery, essential components of the discussion, and the utility of various tools to improve the utilization of epilepsy surgery.
Authors: Laura J Damschroder; David C Aron; Rosalind E Keith; Susan R Kirsh; Jeffery A Alexander; Julie C Lowery Journal: Implement Sci Date: 2009-08-07 Impact factor: 7.327
Authors: Patrick Kwan; Alexis Arzimanoglou; Anne T Berg; Martin J Brodie; W Allen Hauser; Gary Mathern; Solomon L Moshé; Emilio Perucca; Samuel Wiebe; Jacqueline French Journal: Epilepsia Date: 2009-11-03 Impact factor: 5.864
Authors: Glyn Elwyn; Marie Anne Durand; Julia Song; Johanna Aarts; Paul J Barr; Zackary Berger; Nan Cochran; Dominick Frosch; Dariusz Galasiński; Pål Gulbrandsen; Paul K J Han; Martin Härter; Paul Kinnersley; Amy Lloyd; Manish Mishra; Lilisbeth Perestelo-Perez; Isabelle Scholl; Kounosuke Tomori; Lyndal Trevena; Holly O Witteman; Trudy Van der Weijden Journal: BMJ Date: 2017-11-06