TY - JOUR
T1 - Neurologist–patient communication about epilepsy in the United States, Spain, and Germany
AU - Stern, John M.
AU - Cendes, Fernando
AU - Gilliam, Frank
AU - Kwan, Patrick
AU - Ryvlin, Philippe
AU - Sirven, Joseph
AU - Smith, Brien
AU - Adomas, Aleksandra
AU - Walter, Lauren
N1 - Funding Information:
Editorial support in the preparation of this publication was provided by MicroMass Communications, Inc., Cary, NC, and funded by UCB, Inc., Atlanta, GA. The authors thank Jeff Troy from Verilogue, Inc., for providing details about the methodology.
Funding Information:
This study was funded by UCB, Inc., Atlanta, GA. The authors were responsible for all content and editorial decisions, and received no honoraria related to the development of this publication.
Funding Information:
J.M. Stern serves on scientific advisory boards for UCB and Lundbeck; serves as Associate Editor for MedLink Neurology and on the editorial board of International Journal of Epilepsy; receives publishing royalties for Atlas of EEG Patterns, 2nd ed. (Lippincott Williams & Wilkins, 2013) and Atlas of Video-EEG Monitoring (McGraw-Hill, 2011); serves on speakers’ bureaus for UCB, Sunovion, Eisai, Cyberonics, and Lund-beck; practices clinical neurology (epilepsy) at UCLA (50% of effort); and receives research support from Leff Family Foundation. F. Cendes has served as a consultant for and received funding for travel and speaker honoraria from UCB; serves as an Associate Editor for Epilepsia and on the editorial boards of Neurology®, Epilepsy Research, Arquivos de Neuro-psiquiatria, and Epilepsy and Behavior; receives research support from Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP) and Conselho Nacional de Pesquisa (CNPq) Brazil; and is a member of the Diagnostic Methods Commission for International League Against Epilepsy. F. Gilliam serves on the editorial board of Epilepsy Currents. P. Kwan serves on scientific advisory boards for Eisai and UCB Pharma; has received funding for travel and/or speaker honoraria from UCB and Novartis; served as an Associate Editor of Epilepsy Research; is author on patents re: Detection of HLA genotype and Microfluidic platform and Method for Controlling the Same; receives publishing royalties for Fast Facts: Epilepsy (revised 4th ed.) (Health Press, 2011); and receives research support and/or honoraria from Eisai, GlaxoSmithKline, Johnson & Johnson, Pfizer, UCB Pharma, Australia Research Council (DP140101967), Health and Medical Research Fund (01120086, 01120186), National Health & Medical Research Council (APP1103979), and RMH Neuroscience Foundation. P. Ryvlin serves on a scientific advisory board for UCB and as Associate Editor of Epilepsia. J. Sirven has been a consultant for Acorda Therapeutics, UCB, Inc., and NeuroPace; serves on scientific advisory boards for Eisai, Upsher-Smith, and Epilepsy Foundation; has received funding for travel from Epilepsy Foundation; serves on the editorial board of Epilepsy.com; receives publishing royalties from Up to Date and for Clinical Neurology of the Older Adult (Lippincott Williams & Wilkins, 2008); has completed projects for Medscape; receives research support from NIH/NINDS and Epilepsy Foundation; and is on the Board of Directors of the American Brain Foundation. B. Smith is employed by Spectrum Health Medical Group, which received compensation from UCB, Inc., for Dr. Smith’s contributions; and has served on a scientific advisory board and as a consultant for UCB. A. Adomas is an employee of MicroMass Communications, Inc, which has received funding from UCB, Inc. L. Walter was Senior Analyst for Verilogue, Inc. (2014–2017), which has received funding from UCB, Inc., and is currently Research Manager for W2O Group (October 2017-present). Full disclosure form information provided by the authors is available with the full text of this article at Neurology.org/cp.
PY - 2018
Y1 - 2018
N2 - Background Effective communication between patients and their health care providers is recognized as critically important to improve the quality of health services for individuals with epilepsy. We aimed to describe in-office neurologist–patient conversations about epilepsy and focus on disease identification, shared decision-making, and care planning. Methods Transcripts and audio recordings of conversations between patients and neurologists in the United States, Spain, and Germany were analyzed linguistically in the topic areas of epilepsy identification and diagnosis, disease education, treatments, and care planning. Analyses included word-level assessments, topic switching, strategies of information elicitation, identification of topics discussed, quantification of questions asked, and assessment of types of questions asked. Results Conversations of 17 neurologists in the United States, 12 in Spain, and 6 in Germany, with 50, 20, and 16 patients, respectively, were analyzed. Neurologists tended to utilize an event-based, patient-friendly vocabulary to refer to seizures, and in the United States, they avoided using the term “epilepsy.” Regardless of who initiated the treatment discussion, the neurologists in all 3 countries were unilaterally responsible for the treatment decision and choice of medication. When describing a new medication, neurologists most often discussed potential side effects but did not review potential benefits. Neurologists rarely defined seizure control and did not ask patients what seizure control meant to them. Conclusions We identified opportunities related to vocabulary, decision-making, and treatment goal setting that could be targeted to improve neurologist–patient communication about epilepsy, and ultimately, the overall treatment experience and outcomes for patients.
AB - Background Effective communication between patients and their health care providers is recognized as critically important to improve the quality of health services for individuals with epilepsy. We aimed to describe in-office neurologist–patient conversations about epilepsy and focus on disease identification, shared decision-making, and care planning. Methods Transcripts and audio recordings of conversations between patients and neurologists in the United States, Spain, and Germany were analyzed linguistically in the topic areas of epilepsy identification and diagnosis, disease education, treatments, and care planning. Analyses included word-level assessments, topic switching, strategies of information elicitation, identification of topics discussed, quantification of questions asked, and assessment of types of questions asked. Results Conversations of 17 neurologists in the United States, 12 in Spain, and 6 in Germany, with 50, 20, and 16 patients, respectively, were analyzed. Neurologists tended to utilize an event-based, patient-friendly vocabulary to refer to seizures, and in the United States, they avoided using the term “epilepsy.” Regardless of who initiated the treatment discussion, the neurologists in all 3 countries were unilaterally responsible for the treatment decision and choice of medication. When describing a new medication, neurologists most often discussed potential side effects but did not review potential benefits. Neurologists rarely defined seizure control and did not ask patients what seizure control meant to them. Conclusions We identified opportunities related to vocabulary, decision-making, and treatment goal setting that could be targeted to improve neurologist–patient communication about epilepsy, and ultimately, the overall treatment experience and outcomes for patients.
UR - http://www.scopus.com/inward/record.url?scp=85064140445&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85064140445&partnerID=8YFLogxK
U2 - 10.1212/CPJ.0000000000000442
DO - 10.1212/CPJ.0000000000000442
M3 - Article
AN - SCOPUS:85064140445
VL - 8
SP - 93
EP - 101
JO - Neurology: Clinical Practice
JF - Neurology: Clinical Practice
SN - 2163-0402
IS - 2
ER -