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Technology as treatment: An exploratory study on the use of virtual complementary and integrative therapies by neurology outpatients [Meeting Abstract]

Minen, M T; Busis, N; Friedman, S; Campbell, M; Sahu, A; Maisha, K; Hossain, Q; Soviero, M; Verma, D; Yao, L; Foo, F; Bhatt, J; Balcer, L; Galetta, S L; Thawani, S
One sentence summary: The purpose of this investigation was to expand the evidence base on CITs delivered by telehealth by evaluating CIT use in patients who presented to a large urban tertiary care neurology practice and to examine predictors of CIT use during the pandemic.
Background(s): Patients with neurological disorders may seek treatment options in addition to those recommended by their providers. Prior to the COVID-19 pandemic, about half of patients from populations that sought care in neurology tried complementary and integrative therapies (CITs). Given the reductions in in-person visits and the increases in teleneurology visits, we sought to determine whether patients increased their use of virtual complementary and integrative therapies.
Method(s): By examining two separate datasets that included cohorts of patients with neurological disorders, we assessed patients' use of virtual (and non-virtual) CITs and determined whether there were clinical characteristics that predicted their use. The two studies that comprised this report included one that examined patient and provider experiences with teleneurology visits, and another that assessed patients with a history of COVID-19 infection who presented for neurologic evaluation.
Result(s): Patients who postponed medical treatment for non-COVID- 19- related problems during the pandemic were more likely to seek CITs. Virtual exercise, virtual psychotherapy and relaxation/meditation smartphone applications were the most frequent types of virtual CITs chosen by patients. In both studies, age was a key demographic factor associated with mobile/ virtual CIT usage.
Conclusion(s): Data from our investigations demonstrated that, in addition to its other roles in teleneurology, CIT-related technologies might be utilized in the treatment of neurologic conditions
EMBASE:638323851
ISSN: 1526-4610
CID: 5292742

Differential and shared genetic effects on kidney function between diabetic and non-diabetic individuals

Winkler, Thomas W; Rasheed, Humaira; Teumer, Alexander; Gorski, Mathias; Rowan, Bryce X; Stanzick, Kira J; Thomas, Laurent F; Tin, Adrienne; Hoppmann, Anselm; Chu, Audrey Y; Tayo, Bamidele; Thio, Chris H L; Cusi, Daniele; Chai, Jin-Fang; Sieber, Karsten B; Horn, Katrin; Li, Man; Scholz, Markus; Cocca, Massimiliano; Wuttke, Matthias; van der Most, Peter J; Yang, Qiong; Ghasemi, Sahar; Nutile, Teresa; Li, Yong; Pontali, Giulia; Günther, Felix; Dehghan, Abbas; Correa, Adolfo; Parsa, Afshin; Feresin, Agnese; de Vries, Aiko P J; Zonderman, Alan B; Smith, Albert V; Oldehinkel, Albertine J; De Grandi, Alessandro; Rosenkranz, Alexander R; Franke, Andre; Teren, Andrej; Metspalu, Andres; Hicks, Andrew A; Morris, Andrew P; Tönjes, Anke; Morgan, Anna; Podgornaia, Anna I; Peters, Annette; Körner, Antje; Mahajan, Anubha; Campbell, Archie; Freedman, Barry I; Spedicati, Beatrice; Ponte, Belen; Schöttker, Ben; Brumpton, Ben; Banas, Bernhard; Krämer, Bernhard K; Jung, Bettina; Åsvold, Bjørn Olav; Smith, Blair H; Ning, Boting; Penninx, Brenda W J H; Vanderwerff, Brett R; Psaty, Bruce M; Kammerer, Candace M; Langefeld, Carl D; Hayward, Caroline; Spracklen, Cassandra N; Robinson-Cohen, Cassianne; Hartman, Catharina A; Lindgren, Cecilia M; Wang, Chaolong; Sabanayagam, Charumathi; Heng, Chew-Kiat; Lanzani, Chiara; Khor, Chiea-Chuen; Cheng, Ching-Yu; Fuchsberger, Christian; Gieger, Christian; Shaffer, Christian M; Schulz, Christina-Alexandra; Willer, Cristen J; Chasman, Daniel I; Gudbjartsson, Daniel F; Ruggiero, Daniela; Toniolo, Daniela; Czamara, Darina; Porteous, David J; Waterworth, Dawn M; Mascalzoni, Deborah; Mook-Kanamori, Dennis O; Reilly, Dermot F; Daw, E Warwick; Hofer, Edith; Boerwinkle, Eric; Salvi, Erika; Bottinger, Erwin P; Tai, E-Shyong; Catamo, Eulalia; Rizzi, Federica; Guo, Feng; Rivadeneira, Fernando; Guilianini, Franco; Sveinbjornsson, Gardar; Ehret, Georg; Waeber, Gerard; Biino, Ginevra; Girotto, Giorgia; Pistis, Giorgio; Nadkarni, Girish N; Delgado, Graciela E; Montgomery, Grant W; Snieder, Harold; Campbell, Harry; White, Harvey D; Gao, He; Stringham, Heather M; Schmidt, Helena; Li, Hengtong; Brenner, Hermann; Holm, Hilma; Kirsten, Holgen; Kramer, Holly; Rudan, Igor; Nolte, Ilja M; Tzoulaki, Ioanna; Olafsson, Isleifur; Martins, Jade; Cook, James P; Wilson, James F; Halbritter, Jan; Felix, Janine F; Divers, Jasmin; Kooner, Jaspal S; Lee, Jeannette Jen-Mai; O'Connell, Jeffrey; Rotter, Jerome I; Liu, Jianjun; Xu, Jie; Thiery, Joachim; Ärnlöv, Johan; Kuusisto, Johanna; Jakobsdottir, Johanna; Tremblay, Johanne; Chambers, John C; Whitfield, John B; Gaziano, John M; Marten, Jonathan; Coresh, Josef; Jonas, Jost B; Mychaleckyj, Josyf C; Christensen, Kaare; Eckardt, Kai-Uwe; Mohlke, Karen L; Endlich, Karlhans; Dittrich, Katalin; Ryan, Kathleen A; Rice, Kenneth M; Taylor, Kent D; Ho, Kevin; Nikus, Kjell; Matsuda, Koichi; Strauch, Konstantin; Miliku, Kozeta; Hveem, Kristian; Lind, Lars; Wallentin, Lars; Yerges-Armstrong, Laura M; Raffield, Laura M; Phillips, Lawrence S; Launer, Lenore J; Lyytikäinen, Leo-Pekka; Lange, Leslie A; Citterio, Lorena; Klaric, Lucija; Ikram, M Arfan; Ising, Marcus; Kleber, Marcus E; Francescatto, Margherita; Concas, Maria Pina; Ciullo, Marina; Piratsu, Mario; Orho-Melander, Marju; Laakso, Markku; Loeffler, Markus; Perola, Markus; de Borst, Martin H; Gögele, Martin; Bianca, Martina La; Lukas, Mary Ann; Feitosa, Mary F; Biggs, Mary L; Wojczynski, Mary K; Kavousi, Maryam; Kanai, Masahiro; Akiyama, Masato; Yasuda, Masayuki; Nauck, Matthias; Waldenberger, Melanie; Chee, Miao-Li; Chee, Miao-Ling; Boehnke, Michael; Preuss, Michael H; Stumvoll, Michael; Province, Michael A; Evans, Michele K; O'Donoghue, Michelle L; Kubo, Michiaki; Kähönen, Mika; Kastarinen, Mika; Nalls, Mike A; Kuokkanen, Mikko; Ghanbari, Mohsen; Bochud, Murielle; Josyula, Navya Shilpa; Martin, Nicholas G; Tan, Nicholas Y Q; Palmer, Nicholette D; Pirastu, Nicola; Schupf, Nicole; Verweij, Niek; Hutri-Kähönen, Nina; Mononen, Nina; Bansal, Nisha; Devuyst, Olivier; Melander, Olle; Raitakari, Olli T; Polasek, Ozren; Manunta, Paolo; Gasparini, Paolo; Mishra, Pashupati P; Sulem, Patrick; Magnusson, Patrik K E; Elliott, Paul; Ridker, Paul M; Hamet, Pavel; Svensson, Per O; Joshi, Peter K; Kovacs, Peter; Pramstaller, Peter P; Rossing, Peter; Vollenweider, Peter; van der Harst, Pim; Dorajoo, Rajkumar; Sim, Ralene Z H; Burkhardt, Ralph; Tao, Ran; Noordam, Raymond; Mägi, Reedik; Schmidt, Reinhold; de Mutsert, Renée; Rueedi, Rico; van Dam, Rob M; Carroll, Robert J; Gansevoort, Ron T; Loos, Ruth J F; Felicita, Sala Cinzia; Sedaghat, Sanaz; Padmanabhan, Sandosh; Freitag-Wolf, Sandra; Pendergrass, Sarah A; Graham, Sarah E; Gordon, Scott D; Hwang, Shih-Jen; Kerr, Shona M; Vaccargiu, Simona; Patil, Snehal B; Hallan, Stein; Bakker, Stephan J L; Lim, Su-Chi; Lucae, Susanne; Vogelezang, Suzanne; Bergmann, Sven; Corre, Tanguy; Ahluwalia, Tarunveer S; Lehtimäki, Terho; Boutin, Thibaud S; Meitinger, Thomas; Wong, Tien-Yin; Bergler, Tobias; Rabelink, Ton J; Esko, Tõnu; Haller, Toomas; Thorsteinsdottir, Unnur; Völker, Uwe; Foo, Valencia Hui Xian; Salomaa, Veikko; Vitart, Veronique; Giedraitis, Vilmantas; Gudnason, Vilmundur; Jaddoe, Vincent W V; Huang, Wei; Zhang, Weihua; Wei, Wen Bin; Kiess, Wieland; März, Winfried; Koenig, Wolfgang; Lieb, Wolfgang; Gao, Xin; Sim, Xueling; Wang, Ya Xing; Friedlander, Yechiel; Tham, Yih-Chung; Kamatani, Yoichiro; Okada, Yukinori; Milaneschi, Yuri; Yu, Zhi; Stark, Klaus J; Stefansson, Kari; Böger, Carsten A; Hung, Adriana M; Kronenberg, Florian; Köttgen, Anna; Pattaro, Cristian; Heid, Iris M
Reduced glomerular filtration rate (GFR) can progress to kidney failure. Risk factors include genetics and diabetes mellitus (DM), but little is known about their interaction. We conducted genome-wide association meta-analyses for estimated GFR based on serum creatinine (eGFR), separately for individuals with or without DM (nDM = 178,691, nnoDM = 1,296,113). Our genome-wide searches identified (i) seven eGFR loci with significant DM/noDM-difference, (ii) four additional novel loci with suggestive difference and (iii) 28 further novel loci (including CUBN) by allowing for potential difference. GWAS on eGFR among DM individuals identified 2 known and 27 potentially responsible loci for diabetic kidney disease. Gene prioritization highlighted 18 genes that may inform reno-protective drug development. We highlight the existence of DM-only and noDM-only effects, which can inform about the target group, if respective genes are advanced as drug targets. Largely shared effects suggest that most drug interventions to alter eGFR should be effective in DM and noDM.
PMCID:9192715
PMID: 35697829
ISSN: 2399-3642
CID: 5290962

IN-HOME-PD: The effects of longitudinal telehealth-enhanced interdisciplinary home visits on care and quality of life for homebound individuals with Parkinson's disease

Fleisher, Jori E; Hess, Serena P; Klostermann, Ellen C; Lee, Jeanette; Myrick, Erica; Mitchem, Daniela; Niemet, Claire; Woo, Katheryn; Sennott, Brianna J; Sanghvi, Maya; Witek, Natalie; Beck, James C; Wilkinson, Jayne R; Ouyang, Bichun; Hall, Deborah A; Chodosh, Joshua
INTRODUCTION/BACKGROUND:Homebound individuals with advanced Parkinson's disease (PD) are underrepresented in research and care. We tested the impact of interdisciplinary, telehealth-enhanced home visits (IN-HOME-PD) on patient quality of life (QoL) compared with usual care. METHODS:Nonrandomized controlled trial of quarterly, structured, telehealth-enhanced interdisciplinary home visits focused on symptom management, home safety, medication reconciliation, and psychosocial needs (ClinicalTrials.gov NCT03189459). We enrolled homebound participants with advanced PD (Hoehn & Yahr (HY) stage ≥3). Usual care participants had ≥2 visits in the Parkinson's Outcomes Project (POP) registry. We compared within- and between-group one-year change in QoL using the Parkinson's Disease Questionnaire. RESULTS:Sixty-five individuals enrolled in IN-HOME-PD (32.3% women; mean age 78.9 (SD 7.6) years; 74.6% white; 78.5% HY ≥ 4) compared with 319 POP controls, with differences in age, race, and PD severity (37.9% women; mean age 70.1 (7.8) years; 96.2% white; 15.1% HY ≥ 4). Longitudinally, the intervention group's QoL remained unchanged (within-group p = 0.74, Cohen's d = 0.05) while QoL decreased over time in POP controls (p < 0.001, Cohen's d = 0.27). The difference favored the intervention (between-group p = 0.04). POP participants declined in 7/8 dimensions while IN-HOME-PD participants' bodily discomfort improved and hospice use and death at home-markers of goal-concordant care-far exceeded national data. CONCLUSIONS:Telehealth-enhanced home visits can stabilize and may improve the predicted QoL decline in advanced PD via continuity of care and facilitating goal-concordant care, particularly among diverse populations. Extrapolating features of this model may improve continuity of care and outcomes in advanced PD.
PMID: 35963046
ISSN: 1873-5126
CID: 5287442

Neuromodulation Strategies to Reduce Inflammation and Improve Lung Complications in COVID-19 Patients

Czura, Christopher J; Bikson, Marom; Charvet, Leigh; Chen, Jiande D Z; Franke, Manfred; Fudim, Marat; Grigsby, Eric; Hamner, Sam; Huston, Jared M; Khodaparast, Navid; Krames, Elliot; Simon, Bruce J; Staats, Peter; Vonck, Kristl
Since the outbreak of the COVID-19 pandemic, races across academia and industry have been initiated to identify and develop disease modifying or preventative therapeutic strategies has been initiated. The primary focus has been on pharmacological treatment of the immune and respiratory system and the development of a vaccine. The hyperinflammatory state ("cytokine storm") observed in many cases of COVID-19 indicates a prognostically negative disease progression that may lead to respiratory distress, multiple organ failure, shock, and death. Many critically ill patients continue to be at risk for significant, long-lasting morbidity or mortality. The human immune and respiratory systems are heavily regulated by the central nervous system, and intervention in the signaling of these neural pathways may permit targeted therapeutic control of excessive inflammation and pulmonary bronchoconstriction. Several technologies, both invasive and non-invasive, are available and approved for clinical use, but have not been extensively studied in treatment of the cytokine storm in COVID-19 patients. This manuscript provides an overview of the role of the nervous system in inflammation and respiration, the current understanding of neuromodulatory techniques from preclinical and clinical studies and provides a rationale for testing non-invasive neuromodulation to modulate acute systemic inflammation and respiratory dysfunction caused by SARS-CoV-2 and potentially other pathogens. The authors of this manuscript have co-founded the International Consortium on Neuromodulation for COVID-19 to advocate for and support studies of these technologies in the current coronavirus pandemic.
PMCID:9329660
PMID: 35911909
ISSN: 1664-2295
CID: 5287802

Short Review/Perspective on Adjacent Segment Disease (ASD) Following Cervical Fusion Versus Arthroplasty

Epstein, Nancy E; Agulnick, Marc A
Background/UNASSIGNED:Although the incidence of radiographic Adjacent Segment Disease (ASD) following anterior cervical diskectomy/fusion (ACDF) or cervical disc arthroplasty (CDA) typically ranges from 2-4%/year, reportedly fewer patients are symptomatic, and even fewer require secondary surgery. Methods/UNASSIGNED:Multiple studies have documented a 2-4% incidence of radiographic ASD following either ACDF or CDA per year. However, fewer are symptomatic from ASD, and even fewer require additional surgery/reoperations. Results/UNASSIGNED:In a meta-analysis (2016) involving 83 papers, the incidence of radiographic ASD per year was 2.79%, but symptomatic disease was present in just 1.43% of patients with only 0.24% requiring secondary surgery. In another study (2019) involving 38,149 patients undergoing ACDF, 2.9% (1092 patients; 0.62% per year) had radiographic ASD within an average of 4.66 postoperative years; the younger the patient at the index surgery, the higher the reoperation rate (i.e. < 40 years of age 4.56 X reoperations vs. <70 at 2.1 X reoperations). In a meta-analysis of 32 articles focusing on ASD 12-24 months following CDA, adjacent segment degeneration (ASDeg) occurred in 5.15% of patients, but adjacent segment disease (AS Dis) was noted in just 0.2%/ year. Further, AS degeneration occurred in 7.4% of patients after 1-level vs. 15.6% following 2 level fusions, confirming that CDA's "motion-sparing" design did not produce the "anticipated" beneficial results. Conclusion/UNASSIGNED:The incidence of radiographic ASD ranges from 2-4% per year for ACDF and CDA. Additionally, both demonstrate lesser frequencies of symptomatic ASD, and the need for secondary surgery. Further, doubling the frequency of ASD following 2 vs. 1-level CDA, should prompt surgeons to limit surgery to only essential levels.
PMCID:9345126
PMID: 35928322
ISSN: 2229-5097
CID: 5288282

Pepinemab antibody blockade of SEMA4D in early Huntington's disease: a randomized, placebo-controlled, phase 2 trial

Feigin, Andrew; Evans, Elizabeth E; Fisher, Terrence L; Leonard, John E; Smith, Ernest S; Reader, Alisha; Mishra, Vikas; Manber, Richard; Walters, Kimberly A; Kowarski, Lisa; Oakes, David; Siemers, Eric; Kieburtz, Karl D; Zauderer, Maurice
SIGNAL is a multicenter, randomized, double-blind, placebo-controlled phase 2 study (no. NCT02481674) established to evaluate pepinemab, a semaphorin 4D (SEMA4D)-blocking antibody, for treatment of Huntington's disease (HD). The trial enrolled a total of 265 HD gene expansion carriers with either early manifest (EM, n = 179) or late prodromal (LP, n = 86) HD, randomized (1:1) to receive 18 monthly infusions of pepinemab (n = 91 EM, 41 LP) or placebo (n = 88 EM, 45 LP). Pepinemab was generally well tolerated, with a relatively low frequency of serious treatment-emergent adverse events of 5% with pepinemab compared to 9% with placebo, including both EM and LP participants. Coprimary efficacy outcome measures consisted of assessments within the EM cohort of (1) a two-item HD cognitive assessment family comprising one-touch stockings of Cambridge (OTS) and paced tapping (PTAP) and (2) clinical global impression of change (CGIC). The differences between pepinemab and placebo in mean change (95% confidence interval) from baseline at month 17 for OTS were -1.98 (-4.00, 0.05) (one-sided P = 0.028), and for PTAP 1.43 (-0.37, 3.23) (one-sided P = 0.06). Similarly, because a significant treatment effect was not observed for CGIC, the coprimary endpoint, the study did not meet its prespecified primary outcomes. Nevertheless, a number of other positive outcomes and post hoc subgroup analyses-including additional cognitive measures and volumetric magnetic resonance imaging and fluorodeoxyglucose-positron-emission tomography imaging assessments-provide rationale and direction for the design of a phase 3 study and encourage the continued development of pepinemab in patients diagnosed with EM HD.
PMCID:9361919
PMID: 35941373
ISSN: 1546-170x
CID: 5286732

Spatiotemporal dynamics of human high gamma discriminate naturalistic behavioral states

Alasfour, Abdulwahab; Gabriel, Paolo; Jiang, Xi; Shamie, Isaac; Melloni, Lucia; Thesen, Thomas; Dugan, Patricia; Friedman, Daniel; Doyle, Werner; Devinsky, Orin; Gonda, David; Sattar, Shifteh; Wang, Sonya; Halgren, Eric; Gilja, Vikash
In analyzing the neural correlates of naturalistic and unstructured behaviors, features of neural activity that are ignored in a trial-based experimental paradigm can be more fully studied and investigated. Here, we analyze neural activity from two patients using electrocorticography (ECoG) and stereo-electroencephalography (sEEG) recordings, and reveal that multiple neural signal characteristics exist that discriminate between unstructured and naturalistic behavioral states such as "engaging in dialogue" and "using electronics". Using the high gamma amplitude as an estimate of neuronal firing rate, we demonstrate that behavioral states in a naturalistic setting are discriminable based on long-term mean shifts, variance shifts, and differences in the specific neural activity's covariance structure. Both the rapid and slow changes in high gamma band activity separate unstructured behavioral states. We also use Gaussian process factor analysis (GPFA) to show the existence of salient spatiotemporal features with variable smoothness in time. Further, we demonstrate that both temporally smooth and stochastic spatiotemporal activity can be used to differentiate unstructured behavioral states. This is the first attempt to elucidate how different neural signal features contain information about behavioral states collected outside the conventional experimental paradigm.
PMID: 35939509
ISSN: 1553-7358
CID: 5286572

Non-Pharmacologic Interventions for Hispanic Caregivers of Persons with Dementia: Systematic Review and Meta-Analysis

Dessy, Alexa; Zhao, Amanda J; Kyaw, Kay; Vieira, Dorice; Salinas, Joel
BACKGROUND:As the Hispanic/Latino (HL) population grows, so too does the need for HL family caregivers for persons with dementia. HL caregivers tend to have less education, lower health literacy, and lower income, each uniquely compounding burden. Research is needed to appropriately tailor interventions for this population. OBJECTIVE:A systematic review and meta-analysis was conducted to 1) provide an updated review of non-pharmacologic intervention studies for HL dementia caregivers, 2) characterize promising interventions, and 3) highlight opportunities for future research. METHODS:Databases were searched for articles evaluating non-pharmacologic interventions for HL dementia caregivers. Studies were excluded if target populations did not include HLs or if no intervention was delivered. Data were extracted and random effects meta-analysis was performed on two primary outcomes: caregiver depression and burden. Effect sizes were calculated as pre- and post-intervention standardized mean differences (SMD), and further depression subgroup meta-analysis was performed. Other secondary outcome measures (e.g., perceived social support, caregiver knowledge, anxiety) were evaluated qualitatively. RESULTS:Twenty-three studies were identified. Most included multiple components pertaining to psychosocial support, caregiver education, and community resource facilitation. Many studies were successful in improving caregiver outcomes, though intervention design varied. Meta-analysis revealed minimal to moderate heterogeneity and small effect size in improving depressive symptoms (SMD = -0.31, 95% CI -0.46 to -0.16; I2 = 50.16%) and burden (SMD = -0.28, 95% CI -0.37 to -0.18; I2 = 11.06%). CONCLUSION/CONCLUSIONS:Although intervention components varied, many reported outcome improvements. Future studies may benefit from targeting physical health, addressing sociocultural and economic contexts of caregivers, and leveraging technology.
PMID: 35938246
ISSN: 1875-8908
CID: 5286552

An Artificial Neural Network Model for the Prediction of Perioperative Blood Transfusion in Adult Spinal Deformity Surgery

De la Garza Ramos, Rafael; Hamad, Mousa K; Ryvlin, Jessica; Krol, Oscar; Passias, Peter G; Fourman, Mitchell S; Shin, John H; Yanamadala, Vijay; Gelfand, Yaroslav; Murthy, Saikiran; Yassari, Reza
Prediction of blood transfusion after adult spinal deformity (ASD) surgery can identify at-risk patients and potentially reduce its utilization and the complications associated with it. The use of artificial neural networks (ANNs) offers the potential for high predictive capability. A total of 1173 patients who underwent surgery for ASD were identified in the 2017-2019 NSQIP databases. The data were split into 70% training and 30% testing cohorts. Eighteen patient and operative variables were used. The outcome variable was receiving RBC transfusion intraoperatively or within 72 h after surgery. The model was assessed by its sensitivity, positive predictive value, F1-score, accuracy (ACC), and area under the curve (AUROC). Average patient age was 56 years and 63% were female. Pelvic fixation was performed in 21.3% of patients and three-column osteotomies in 19.5% of cases. The transfusion rate was 50.0% (586/1173 patients). The best model showed an overall ACC of 81% and 77% on the training and testing data, respectively. On the testing data, the sensitivity was 80%, the positive predictive value 76%, and the F1-score was 78%. The AUROC was 0.84. ANNs may allow the identification of at-risk patients, potentially decrease the risk of transfusion via strategic planning, and improve resource allocation.
PMID: 35956053
ISSN: 2077-0383
CID: 5287272

Impact of the COVID-19 pandemic on people with epilepsy: findings from the US arm of the COV-E study

Dugan, Patricia; Carroll, Elizabeth; Thorpe, Jennifer; Jette, Nathalie; Agarwal, Parul; Ashby, Samantha; Hanna, Jane; French, Jacqueline; Devinsky, Orrin; Sen, Arjune
OBJECTIVES/OBJECTIVE:As part of the COVID-19 and Epilepsy (COV-E) global study, we aimed to understand the impact of COVID-19 on the medical care and well-being of people with epilepsy (PWE) in the United States, based on their perspectives and those of their caregivers. METHODS:Separate surveys designed for PWE and their caregivers were circulated from April 2020 to July 2021; modifications in March 2021 included a question about COVID-19 vaccination status. RESULTS:We received 788 responses, 71% from PWE (n = 559) and 29% (n=229) from caregivers of persons with epilepsy. A third (n = 308) of respondents reported a change in their health or in the health of the person they care for. Twenty-seven percent (n = 210) reported issues related to worsening mental health. Of respondents taking ASMs (n = 769), 10% (n= 78) reported difficulty taking medications on time, mostly due to stress causing forgetfulness. Less than half of respondents received counseling on mental health and stress. Less than half of the PWE reported having discussions with their healthcare providers about sleep, ASMs and potential side effects, while a larger proportion of caregivers (81%) reported having had discussions with their healthcare providers on the same topics. More PWE and caregivers reported that COVID-19 related measures caused adverse impact on their health in the post-vaccine period than during the pre-vaccine period, citing mental health issues as the primary reason. SIGNIFICANCE/CONCLUSIONS:Our findings indicate that the impact of the COVID-19 pandemic in the US on PWE is multifaceted. Apart from the increased risk of poor COVID-19 outcomes, the pandemic has also had negative effects on mental health and self-management. Healthcare providers must be vigilant for increased emotional distress in PWE during the pandemic and consider the importance of effective counseling to diminish risks related to exacerbated treatment gaps.
PMID: 35929180
ISSN: 2470-9239
CID: 5288312