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4. Barriers and facilitators to implementation of epilepsy self-management programs: a systematic review using qualitative evidence synthesis methods

Author

Lewinski, Allison A, Shapiro, Abigail, Gierisch, Jennifer M, Goldstein, Karen M, Blalock, Dan V, Luedke, Matthew W, Gordon, Adelaide M, Bosworth, Hayden B, Drake, Connor, Lewis, Jeffrey D, Sinha, Saurabh R, Husain, Aatif M, Tran, Tung T, Van Noord, Megan G, and Williams, John W

Subjects
Health Services and Systems, Public Health, Health Sciences, Neurosciences, Behavioral and Social Science, Epilepsy, Clinical Research, Brain Disorders, Neurodegenerative, 7.1 Individual care needs, Management of diseases and conditions, Adult, Humans, Self-Management, Self-management, Qualitative research, Medical and Health Sciences, Biomedical and clinical sciences, Health sciences
Abstract

BackgroundEpilepsy affects nearly 50 million people worldwide. Self-management is critical for individuals with epilepsy in order to maintain optimal physical, cognitive, and emotional health. Implementing and adopting a self-management program requires considering many factors at the person, program, and systems levels. We conducted a systematic review of qualitative and mixed-methods studies to identify facilitators and barriers that impact implementation and adoption of self-management programs for adults with epilepsy.MethodsWe used established systematic review methodologies for qualitative and mixed-methods studies. We included studies addressing facilitators (i.e., factors that aided) or barriers (i.e., factors that impeded) to implementation and adoption of self-management interventions for adults with epilepsy. We conducted a narrative thematic synthesis to identify facilitators and barriers.ResultsThe literature search identified 2700 citations; 13 studies met eligibility criteria. Our synthesis identified five themes that categorize facilitators and barriers to successful implementation epilepsy self-management: (1) relevance, intervention content that facilitates acquisition of self-management skills; (2) personalization, intervention components that account for the individual's social, physical, and environmental characteristics; (3) intervention components, components and dosing of the intervention; (4) technology considerations, considerations that account for individual's use, familiarity with, and ownership of technology; and (5) clinician interventionist, role and preparation of the individual who leads intervention. We identified facilitators in 11 of the 13 studies and barriers in 11 of the 13 studies and classified these by social-ecological level (i.e., patient/caregiver, program, site/system).ConclusionIdentification of facilitators and barriers at multiple levels provides insight into disease-specific factors that influence implementation and adoption of self-management programs for individuals with epilepsy. Our findings indicate that involving individuals with epilepsy and their caregivers in intervention development, and then tailoring intervention content during the intervention, can help ensure the content is relevant to intervention participants. Our findings also indicate the role of the clinician (i.e., the individual who provides self-management education) is important to intervention implementation, and key issues with clinicians were identified as barriers and opportunities for improvement. Overall, our findings have practical value for those seeking to implement and adopt self-management interventions for epilepsy and other chronic illnesses.Systematic review registrationPROSPERO registration number is CRD42018098604.

Published
2020

6. Corrigendum to “Effectiveness and tolerability in people with narcolepsy transitioning from sodium oxybate to low-sodium oxybate: Data from the real-world TENOR study” [Sleep Med. 109 (2023) 65–74 ISSN 1389–9457]

Author

Bae, Charles J., primary, Zee, Phyllis C., additional, Leary, Eileen B., additional, Fuller, Douglas S., additional, Macfadden, Wayne, additional, Candler, Shawn, additional, Steininger, Teresa L., additional, and Husain, Aatif M., additional

Published
2024
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7. Development of an International Standard Set of Outcomes and Measurement Methods for Routine Practice for Adults with Epilepsy: The International Consortium for Health Outcomes Measurement Consensus Recommendations

Author

Mitchell, James W., primary, Sossi, Frieda, additional, Miller, Isabel, additional, Jaber, Paula Blancarte, additional, Das‐Gupta, Zofia, additional, Fialho, Luz Sousa, additional, Amos, Action, additional, Austin, Joan K., additional, Badzik, Scott, additional, Baker, Gus, additional, Zeev, Bruria Ben, additional, Bolton, Jeffrey, additional, Chaplin, John E., additional, Cross, J. Helen, additional, Chan, Derrick, additional, Gericke, Christian A., additional, Husain, Aatif M., additional, Lally, Lorraine, additional, Mbugua, Sharon, additional, Megan, Cassidy, additional, Mesa, Tomás, additional, Nuñez, Lilia, additional, von Oertzen, Tim J., additional, Perucca, Emilio, additional, Pullen, Angie, additional, Ronen, Gabriel M., additional, Sajatovic, Martha, additional, Singh, Mamta B., additional, Wilmshurst, Jo M., additional, Wollscheid, Leonie, additional, and Berg, Anne T., additional

Published
2024
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13. Development of an International Standard Set of Outcomes and Measurement Methods for Routine Practice for Infants, Children, and Adolescents with Epilepsy: The International Consortium for Health Outcomes Measurement Consensus Recommendations.

Author

Mitchell, James W., Sossi, Frieda, Miller, Isabel, Jaber, Paula Blancarte, Das‐Gupta, Zofia, Fialho, Luz Sousa, Amos, Action, Austin, Joan K., Badzik, Scott, Baker, Gus, Ben Zeev, Bruria, Bolton, Jeffrey, Chaplin, John E., Cross, J. Helen, Chan, Derrick, Gericke, Christian A., Husain, Aatif M., Lally, Lorraine, Mbugua, Sharon, and Megan, Cassidy

Subjects
HEALTH outcome assessment, CHILDREN with epilepsy, EPILEPSY, CHILDHOOD epilepsy, LANGUAGE acquisition, ADOLESCENCE, CHILDREN with developmental disabilities
Abstract

At present, there is no internationally accepted set of core outcomes or measurement methods for epilepsy clinical practice. The International Consortium for Health Outcomes Measurement (ICHOM) convened an international working group of experts in epilepsy, people with epilepsy, and their representatives to develop minimum sets of standardized outcomes and outcome measurement methods for clinical practice. Using modified Delphi consensus methods with consecutive rounds of online voting over 12 months, a core set of outcomes and corresponding measurement tool packages to capture the outcomes were identified for infants, children, and adolescents with epilepsy. Consensus methods identified 20 core outcomes. In addition to the outcomes identified for the ICHOM Epilepsy adult standard set, behavioral, motor, and cognitive/language development outcomes were voted as essential for all infants and children with epilepsy. The proposed set of outcomes and measurement methods will facilitate the implementation of the use of patient‐centered outcomes in daily practice. [ABSTRACT FROM AUTHOR]

Published
2024
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15. Response to Letters to the Editor by Gregory J, Rice K, McCarthy K, et al. 2023 Regarding: “Guidelines for Qualifications of Neurodiagnostic Personnel: A Joint Position Statement of the American Clinical Neurophysiology Society, the American Association of Neuromuscular & Electrodiagnostic Medicine, the American Society of Neurophysiological Monitoring, and ASET—The Neurodiagnostic Society”

Author

López, Jaime R., primary, Kelly, Linda, additional, Ahn-Ewing, Judy, additional, Emerson, Ron, additional, Ford, Carrie, additional, Gale, Clare, additional, Gertsch, Jeffery H., additional, Husain, Aatif, additional, Kincaid, John, additional, Kise, Meledy, additional, Kornegay, Adam, additional, Moreira, Joseph J., additional, Nuwer, Marc, additional, Schneider, Anita, additional, Sullivan, Lucy R., additional, Toleikis, J. Richard, additional, Wall, Lois, additional, and Herman, Susan, additional

Published
2024
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20. Consensus Statement on Continuous EEG in Critically Ill Adults and Children, Part II

Author

Herman, Susan T, Abend, Nicholas S, Bleck, Thomas P, Chapman, Kevin E, Drislane, Frank W, Emerson, Ronald G, Gerard, Elizabeth E, Hahn, Cecil D, Husain, Aatif M, Kaplan, Peter W, LaRoche, Suzette M, Nuwer, Marc R, Quigg, Mark, Riviello, James J, Schmitt, Sarah E, Simmons, Liberty A, Tsuchida, Tammy N, and Hirsch, Lawrence J

Subjects
Neurosciences, Clinical Research, Clinical Trials and Supportive Activities, Generic health relevance, Good Health and Well Being, Adult, Brain Diseases, Child, Critical Care, Critical Illness, Electroencephalography, Female, Humans, Male, Monitoring, Physiologic, EEG, EEG monitoring, Quantitative EEG, Seizure, Nonconvulsive seizure, Status epilepticus, Nonconvulsive status, epilepticus, Intensive care unit, Critical care, Adults, Children, Critical Care Continuous EEG Task Force of the American Clinical Neurophysiology Society, Clinical Sciences, Cognitive Sciences, Neurology & Neurosurgery
Abstract

IntroductionCritical Care Continuous EEG (CCEEG) is a common procedure to monitor brain function in patients with altered mental status in intensive care units. There is significant variability in patient populations undergoing CCEEG and in technical specifications for CCEEG performance.MethodsThe Critical Care Continuous EEG Task Force of the American Clinical Neurophysiology Society developed expert consensus recommendations on the use of CCEEG in critically ill adults and children.RecommendationsThe consensus panel describes the qualifications and responsibilities of CCEEG personnel including neurodiagnostic technologists and interpreting physicians. The panel outlines required equipment for CCEEG, including electrodes, EEG machine and amplifier specifications, equipment for polygraphic data acquisition, EEG and video review machines, central monitoring equipment, and network, remote access, and data storage equipment. The consensus panel also describes how CCEEG should be acquired, reviewed and interpreted. The panel suggests methods for patient selection and triage; initiation of CCEEG; daily maintenance of CCEEG; electrode removal and infection control; quantitative EEG techniques; EEG and behavioral monitoring by non-physician personnel; review, interpretation, and reports; and data storage protocols.ConclusionRecommended qualifications for CCEEG personnel and CCEEG technical specifications will facilitate standardization of this emerging technology.

Published
2015

24. Safety and Efficacy of Natalizumab as Adjunctive Therapy for People With Drug-Resistant Epilepsy: A Phase 2 Study

Author

French, Jacqueline A., Cole, Andrew J., Faught, Edward, Theodore, William H., Vezzani, Annamaria, Liow, Kore, Halford, Jonathan J., Armstrong, Robert, Szaflarski, Jerzy P., Hubbard, Sarah, Patel, Jagdish, Chen, Kun, Feng, Wei, Rizzo, Marco, Elkins, Jacob, Knafler, Gabrielle, Parkerson, Kimberly A., Klein, Pavel, Benbadis, Selim, Tecoma, Evelyn, Balabanov, Antoaneta, Vossler, David, Husain, Aatif, Boro, Alex, Oster, Joel, Gelfand, Michael, Koubeissi, Mohamad, Sirven, Joseph, Harvey, Jay, Kassab, Mounzer, Hogan, Edward, Lee, Ki Hyeong, Beach, Robert, Shin, Hae, Sarkis, Rani, Flitman, Stephen, Honeycutt, William, Ayala, Ricardo, Bautista, Ramon, Berg, Michel, Carran, Melissa, Kudrow, David, Ting, Tricia, and Rafecas, Jose

Published
2021
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27. Response to a Letter to the Editor by Gregory et al. Regarding: “Guidelines for Qualifications of Neurodiagnostic Personnel: A Joint Position Statement of the American Clinical Neurophysiology Society, the American Association of Neuromuscular & Electrodiagnostic Medicine, the American Society of Neurophysiological Monitoring, and ASET – The Neurodiagnostic Society”

Author

López, Jaime R., primary, Kelly, Linda, additional, Ahn-Ewing, Judy, additional, Emerson, Ron, additional, Ford, Carrie, additional, Gale, Clare, additional, Gertsch, Jeffery H., additional, Husain, Aatif, additional, Kincaid, John, additional, Kise, Meledy, additional, Kornegay, Adam, additional, Moreira, Joseph J., additional, Nuwer, Marc, additional, Schneider, Anita, additional, Sullivan, Lucy R., additional, Toleikis, J. Richard, additional, Wall, Lois, additional, and Herman, Susan, additional

Published
2023
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32. American Clinical Neurophysiology Societyʼs Standardized Critical Care EEG Terminology: 2021 Version

Author

Hirsch, Lawrence J., Fong, Michael W.K., Leitinger, Markus, LaRoche, Suzette M., Beniczky, Sandor, Abend, Nicholas S., Lee, Jong Woo, Wusthoff, Courtney J., Hahn, Cecil D., Westover, M. Brandon, Gerard, Elizabeth E., Herman, Susan T., Haider, Hiba Arif, Osman, Gamaleldin, Rodriguez-Ruiz, Andres, Maciel, Carolina B., Gilmore, Emily J., Fernandez, Andres, Rosenthal, Eric S., Claassen, Jan, Husain, Aatif M., Yoo, Ji Yeoun, So, Elson L., Kaplan, Peter W., Nuwer, Marc R., van Putten, Michel, Sutter, Raoul, Drislane, Frank W., Trinka, Eugen, and Gaspard, Nicolas

Published
2021
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34. Automated Interpretation of Clinical Electroencephalograms Using Artificial Intelligence

Author

Tveit, Jesper, primary, Aurlien, Harald, additional, Plis, Sergey, additional, Calhoun, Vince D., additional, Tatum, William O., additional, Schomer, Donald L., additional, Arntsen, Vibeke, additional, Cox, Fieke, additional, Fahoum, Firas, additional, Gallentine, William B., additional, Gardella, Elena, additional, Hahn, Cecil D., additional, Husain, Aatif M., additional, Kessler, Sudha, additional, Kural, Mustafa Aykut, additional, Nascimento, Fábio A., additional, Tankisi, Hatice, additional, Ulvin, Line B., additional, Wennberg, Richard, additional, and Beniczky, Sándor, additional

Published
2023
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38. Guidelines for Qualifications of Neurodiagnostic Personnel: A Joint Position Statement of the American Clinical Neurophysiology Society, the American Association of Neuromuscular & Electrodiagnostic Medicine, the American Society of Neurophysiological Monitoring, and ASET—The Neurodiagnostic Society

Author

López, Jaime R., primary, Ahn-Ewing, Judy, additional, Emerson, Ron, additional, Ford, Carrie, additional, Gale, Clare, additional, Gertsch, Jeffery H., additional, Hewitt, Lillian, additional, Husain, Aatif, additional, Kelly, Linda, additional, Kincaid, John, additional, Kise, Meledy, additional, Kornegay, Adam, additional, Moreira, Joseph J., additional, Nuwer, Marc, additional, Schneider, Anita, additional, Stecker, Mark, additional, Sullivan, Lucy R., additional, Toleikis, J. Richard, additional, Wall, Lois, additional, and Herman, Susan, additional

Published
2023
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39. Continued progress in DICOM neurophysiology standardization

Author

Halford, Jonathan J., primary, Brinkmann, Benjamin H., additional, Clunie, David A., additional, Gotman, Jean, additional, Beniczky, Sándor, additional, Rampp, Stefan, additional, Rémi, Jan, additional, Husain, Aatif, additional, Andrew Ehrenberg, J., additional, and Winkler, Silvia, additional

Published
2023
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41. Impairment in Functioning and Quality of Life in Patients with Idiopathic Hypersomnia: The Real World Idiopathic Hypersomnia Outcomes Study (ARISE)

Author

Stevens,Joanne, Schneider,Logan D, Husain,Aatif M, Ito,Diane, Fuller,Douglas S, Zee,Phyllis C, Macfadden,Wayne, Stevens,Joanne, Schneider,Logan D, Husain,Aatif M, Ito,Diane, Fuller,Douglas S, Zee,Phyllis C, and Macfadden,Wayne

Abstract

Joanne Stevens,1 Logan D Schneider,2 Aatif M Husain,3 Diane Ito,4 Douglas S Fuller,5 Phyllis C Zee,6 Wayne Macfadden1 1Global Medical Affairs, Jazz Pharmaceuticals, Philadelphia, PA, USA; 2Stanford University Sleep Medicine Center, Stanford University School of Medicine, Stanford, CA, USA; 3Duke University Department of Neurology, Duke University Medical Center, Durham, NC, USA; 4Stratevi, Santa Monica, CA, USA; 5Biostatistics, Jazz Pharmaceuticals, Philadelphia, PA, USA; 6Department of Neurology and Center for Circadian and Sleep Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, USACorrespondence: Wayne Macfadden, Jazz Pharmaceuticals, 2005 Market Street, Philadelphia, PA, 19103, USA, Tel +1 215-832-3750, Email wayne.macfadden@jazzpharma.comPurpose: Idiopathic hypersomnia is a debilitating neurologic sleep disorder characterized by excessive daytime sleepiness, sleep inertia, and prolonged sleep. Its impact on patients’ quality of life and daily functioning has not been fully elucidated. The Real World Idiopathic Hypersomnia Outcomes Study (ARISE) evaluated the daily functioning, relationships, cognition, emotional well-being, and productivity/employment of participants with idiopathic hypersomnia.Patients and Methods: ARISE was a US-based virtual cross-sectional survey comprising multiple patient-reported outcome measures (Functional Outcomes of Sleep Questionnaire, short version [FOSQ-10], Quality of Life in Neurological Disorders [Neuro-QoL] Social Roles and Stigma domains, British Columbia Cognitive Complaints Inventory [BC-CCI], Patient Health Questionnaire [PHQ-9], and the Work Productivity and Activity Impairment Questionnaire: Specific Health Problem [WPAI:SHP]). Participants were adults 21– 65 years of age with idiopathic hypersomnia. Data were analyzed for all participants and for subgroups with/without long sleep time (LST; self-reported sleep ≥ 11 hours in 24 hours).Results: Of 75 participants enrolled, most were female (

Published
2023

42. Symptom Severity and Treatment Satisfaction in Patients with Idiopathic Hypersomnia: The Real World Idiopathic Hypersomnia Outcomes Study (ARISE)

Author

Schneider,Logan Douglas, Stevens,Joanne, Husain,Aatif M, Ito,Diane, Fuller,Douglas S, Zee,Phyllis C, Macfadden,Wayne, Schneider,Logan Douglas, Stevens,Joanne, Husain,Aatif M, Ito,Diane, Fuller,Douglas S, Zee,Phyllis C, and Macfadden,Wayne

Abstract

Logan Douglas Schneider,1 Joanne Stevens,2 Aatif M Husain,3 Diane Ito,4 Douglas S Fuller,5 Phyllis C Zee,6 Wayne Macfadden2 1Stanford University Sleep Medicine Center, Stanford University School of Medicine, Stanford, CA, USA; 2Global Medical Affairs, Jazz Pharmaceuticals, Philadelphia, PA, USA; 3Department of Neurology, Duke University Medical Center, Durham, NC, USA; 4Stratevi, Santa Monica, CA, USA; 5Biostatistics, Jazz Pharmaceuticals, Philadelphia, PA, USA; 6Department of Neurology and Center for Circadian and Sleep Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, USACorrespondence: Wayne Macfadden, Jazz Pharmaceuticals, 2005 Market Street, Philadelphia, PA, 19103, USA, Tel +1 215-832-3750, Email Wayne.Macfadden@jazzpharma.comObjective: Idiopathic hypersomnia is a debilitating sleep disorder characterized by excessive daytime sleepiness, sleep inertia, and prolonged sleep duration. The patient burden of idiopathic hypersomnia is poorly understood. The Real World Idiopathic Hypersomnia Outcomes Study (ARISE) evaluated symptoms and treatment effectiveness/satisfaction in participants with idiopathic hypersomnia.Methods: ARISE was a United States–based virtual cross-sectional survey. Participants were adults 21– 65 years of age with idiopathic hypersomnia recruited from social media, the Hypersomnia Foundation website, and a patient panel. Self-assessments included the Epworth Sleepiness Scale (ESS), Idiopathic Hypersomnia Severity Scale (IHSS), Treatment Satisfaction Questionnaire for Medication, version II (TSQM-vII), and additional treatment questions. Data were analyzed for all participants and for subgroups with/without long sleep time (LST; ≥ 11 hours in 24 hours).Results: Of 75 participants enrolled, most were female (81.3%). The mean (SD) age was 34.1 (10.7) years and 49% had LST. Most participants took off-label prescription medications (89.3%) and/or used other measures (93.3%) to manage their symptoms. The mean (SD) ESS

Published
2023

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