259 results on '"Smith, Mary"'
Search Results
2. A qualitative study of childhood cancer families' post‐treatment needs and the impact of a community‐based organization in a rural, socioeconomically disadvantaged, majority Hispanic/Latino region.
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Smith, Stephanie M., Teer, Anmol, Tolamatl Ariceaga, Evelyn, Billman, Elle, Benedict, Catherine, Goyal, Anju, Pang, Emily M., Pecos‐Duarte, Caroline, Lewinsohn, Rebecca, Smith, Mary, Boynton, Heidi, Montes, Sandy, Rivera, Esmeralda, Ramirez, Daniela, and Schapira, Lidia
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- 2024
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3. Long‐term intellectual and developmental outcomes after pediatric epilepsy surgery: A systematic review and meta‐analysis.
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Stefanos‐Yakoub, Ilona, Wingeier, Kevin, Held, Ulrike, Latal, Beatrice, Wirrell, Elaine, Smith, Mary Lou, and Ramantani, Georgia
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In addition to the primary aim of seizure freedom, a key secondary aim of pediatric epilepsy surgery is to stabilize and, potentially, optimize cognitive development. Although the efficacy of surgical treatment for seizure control has been established, the long‐term intellectual and developmental trajectories are yet to be delineated. We conducted a systematic review and meta‐analysis of studies reporting pre‐ and postsurgical intelligence or developmental quotients (IQ/DQ) of children with focal lesional epilepsy aged ≤18 years at epilepsy surgery and assessed at >2 years after surgery. We determined the IQ/DQ change and conducted a random‐effects meta‐analysis and meta‐regression to assess its determinants. We included 15 studies reporting on 341 patients. The weighted mean age at surgery was 7.1 years (range =.3–13.8). The weighted mean postsurgical follow‐up duration was 5.6 years (range = 2.7–12.8). The overall estimate of the mean presurgical IQ/DQ was 60 (95% confidence interval [CI] = 47–73), the postsurgical IQ/DQ was 61 (95% CI = 48–73), and the change was +.94 IQ/DQ (95% CI = −1.70 to 3.58, p =.486). Children with presurgical IQ/DQ ≥ 70 showed a tendency for higher gains than those with presurgical IQ/DQ < 70 (p =.059). Higher gains were determined by cessation of antiseizure medication (ASM; p =.041), not just seizure freedom. Our findings indicate, on average, stabilization of intellectual and developmental functioning at long‐term follow‐up after epilepsy surgery. Once seizure freedom has been achieved, ASM cessation enables the optimization of intellectual and developmental trajectories in affected children. [ABSTRACT FROM AUTHOR]
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- 2024
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4. Trajectories of parent well‐being in children with drug‐resistant epilepsy.
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Smith, Mary Lou, Puka, Klajdi, Speechley, Kathy N., Ferro, Mark A., Connolly, Mary B., Major, Philippe, Gallagher, Anne, Almubarak, Salah, Hasal, Simona, Ramachandrannair, Rajesh, Andrade, Andrea, Xu, Qi, Leung, Edward, Snead, O. Carter, and Widjaja, Elysa
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CHILDREN with epilepsy , *WELL-being , *CHILDHOOD epilepsy , *QUALITY of life , *TEMPORAL lobectomy , *EPILEPSY surgery , *PEDIATRIC surgery , *SOCIAL anxiety , *FATHER-child relationship - Abstract
Objective: This longitudinal cohort study aimed to identify trajectories of parent well‐being over the first 2 years after their child's evaluation for candidacy for epilepsy surgery, and to identify the baseline clinical and demographic characteristics associated with these trajectories. Parent well‐being was based on parent depressive and anxiety symptoms and family resources (i.e., family mastery and social support). Methods: Parents of 259 children with drug‐resistant epilepsy (105 of whom eventually had surgery) were recruited from eight epilepsy centers across Canada at the time of their evaluation for epilepsy surgery candidacy. Participants were assessed at baseline and 6‐month, 1‐year, and 2‐year follow‐up. The trajectories of parents' depressive symptoms, anxiety symptoms, and family resources were jointly estimated using multigroup latent class growth models. Results: The analyses identified three trajectories: an optimal‐stable group with no/minimal depressive or anxiety symptoms, and high family resources that remained stable over time; a mild‐decreasing‐plateau group with mild depressive and anxiety symptoms that decreased over time then plateaued, and intermediate family resources that remained stable; and a moderate‐decreasing group with moderate depressive and anxiety symptoms that decreased slightly, and low family resources that remained stable over time. Parents of children with higher health‐related quality of life, fathers, and parents who had higher household income were more likely to have better trajectories of well‐being. Treatment type was not associated with the trajectory groups, but parents whose children were seizure‐free at the time of the last follow‐up were more likely to have better trajectories (optimal‐stable or mild‐decreasing‐plateau trajectories). Significance: This study documented distinct trajectories of parent well‐being, from the time of the child's evaluation for epilepsy surgery. Parents who present with anxiety and depressive symptoms and low family resources do not do well over time. They should be identified and offered supportive services early in their child's epilepsy treatment history. [ABSTRACT FROM AUTHOR]
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- 2023
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5. Scoping review and expert‐based consensus recommendations for assessment and management of psychogenic non‐epileptic (functional) seizures (PNES) in children: A report from the Pediatric Psychiatric Issues Task Force of the International League Against Epilepsy
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Reilly, Colin, Jette, Nathalie, Johnson, Emma C., Kariuki, Symon M., Meredith, Francesca, Wirrell, Elaine, Mula, Marco, Smith, Mary Lou, Walsh, Samantha, Fong, Choong Yi, Wilmshurst, Jo M., Kerr, Mike, Valente, Kette, and Auvin, Stephane
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PSYCHOGENIC nonepileptic seizures ,PSYCHOTHERAPY ,TASK forces ,SCHOOL records ,EPILEPSY ,CHILDREN with developmental disabilities - Abstract
Limited guidance exists regarding the assessment and management of psychogenic non‐epileptic seizures (PNES) in children. Our aim was to develop consensus‐based recommendations to fill this gap. The members of the International League Against Epilepsy (ILAE) Task Force on Pediatric Psychiatric Issues conducted a scoping review adhering to the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses extension for Scoping Reviews (PRISMA‐SR) standards. This was supplemented with a Delphi process sent to pediatric PNES experts. Consensus was defined as ≥80% agreement. The systematic search identified 77 studies, the majority (55%) of which were retrospective (only one randomized clinical trial). The primary means of PNES identification was video electroencephalography (vEEG) in 84% of studies. Better outcome was associated with access to counseling/psychological intervention. Children with PNES have more frequent psychiatric disorders than controls. The Delphi resulted in 22 recommendations: Assessment—There was consensus on the importance of (1) taking a comprehensive developmental history; (2) obtaining a description of the events; (3) asking about potential stressors; (4) the need to use vEEG if available parent, self, and school reports and video recordings can contribute to a "probable" diagnosis; and (5) that invasive provocation techniques or deceit should not be employed. Management—There was consensus about the (1) need for a professional with expertise in epilepsy to remain involved for a period after PNES diagnosis; (2) provision of appropriate educational materials to the child and caregivers; and (3) that the decision on treatment modality for PNES in children should consider the child's age, cognitive ability, and family factors. Comorbidities—There was consensus that all children with PNES should be screened for mental health and neurodevelopmental difficulties. Recommendations to facilitate the assessment and management of PNES in children were developed. Future directions to fill knowledge gaps were proposed. [ABSTRACT FROM AUTHOR]
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- 2023
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6. A longitudinal cohort study of mediators of health‐related quality of life after pediatric epilepsy surgery or medical treatment.
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Smith, Mary Lou, Puka, Klajdi, Speechley, Kathy N., Ferro, Mark A., Connolly, Mary B., Major, Philippe, Gallagher, Anne, Almubarak, Salah, Hasal, Simona, Ramachandrannair, Rajesh, Andrade, Andrea, Xu, Qi, Leung, Edward, Snead, O. Carter, and Widjaja, Elysa
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PEDIATRIC surgery , *QUALITY of life , *EPILEPSY surgery , *THERAPEUTICS , *CHILDREN with epilepsy , *CHILDHOOD epilepsy - Abstract
Objectives: The purpose of this longitudinal cohort study was to examine the variables that influence health‐related quality of life (HRQOL) after epilepsy surgery in children. We examined whether treatment type (surgical vs medical therapy) and seizure control are related to other variables that have been shown to influence HRQOL, namely depressive symptoms in children with epilepsy or their parents, and the availability of family resources. Methods: In total, 265 children with drug‐resistant epilepsy were recruited from eight epilepsy centers across Canada at the time of their evaluation for candidacy for epilepsy surgery and were assessed at baseline, 6‐month, 1‐year, and 2‐year follow‐up. Parents completed the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE‐55) and measures of family resources and depression; children completed depression inventories. Causal mediation analyses using natural effect models were used to evaluate the extent to which the relationship between treatment and HRQOL was explained by seizure control, child and parent depressive symptoms, and family resources. Results: Overall, 111 children underwent surgery and 154 were treated with medical therapy only. The HRQOL scores of surgical patients were 3.4 points higher (95% confidence interval [CI]: −0.2, 7.0) relative to medical patients at the 2‐year follow‐up after adjusting for baseline covariates, with 66% of the effect of surgery attributed to seizure control. Child or parent depressive symptoms and family resources had negligible mediation effects between treatment and HRQOL. The effect of seizure control on HRQOL was not mediated by child or parent depressive symptoms, or by family resources. Significance: The findings demonstrate that seizure control is on the causal pathway between epilepsy surgery and improved HRQOL in children with drug‐resistant epilepsy. However, child and parent depressive symptoms and family resources were not significant mediators. The results highlight the importance of achieving seizure control to improve HRQOL. [ABSTRACT FROM AUTHOR]
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- 2023
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7. Which is more deleterious to cognitive performance? Interictal epileptiform discharges vs anti‐seizure medication.
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Warsi, Nebras M., Wong, Simeon M., Gorodetsky, Carolina, Suresh, Hrishikesh, Arski, Olivia N., Ebden, Mark, Kerr, Elizabeth N., Smith, Mary Lou, Yau, Ivanna, Ochi, Ayako, Otsubo, Hiroshi, Sharma, Rohit, Jain, Puneet, Weiss, Shelly, Donner, Elizabeth J., Snead, O. Carter, and Ibrahim, George M.
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EPILEPTIFORM discharges ,ANTICONVULSANTS ,COGNITIVE ability ,PARTIAL epilepsy ,CHILDREN with epilepsy - Abstract
Children with epilepsy commonly have comorbid neurocognitive impairments that severely affect their psychosocial well‐being, education, and future career prospects. Although the provenance of these deficits is multifactorial, the effects of interictal epileptiform discharges (IEDs) and anti‐seizure medications (ASMs) are thought to be particularly severe. Although certain ASMs can be leveraged to inhibit IED occurrence, it remains unclear whether epileptiform discharges or the medications themselves are most deleterious to cognition. To examine this question, 25 children undergoing invasive monitoring for refractory focal epilepsy performed one or more sessions of a cognitive flexibility task. Electrophysiological data were recorded to detect IEDs. Between repeated sessions, prescribed ASMs were either continued or titrated to <50% of the baseline dose. Hierarchical mixed‐effects modeling assessed the relationship between task reaction time (RT), IED occurrence, ASM type, and dose while controlling for seizure frequency. Both presence (β ± SE = 49.91 ± 16.55 ms, p =.003) and number of IEDs (β ± SE = 49.84 ± 12.51 ms, p <.001) were associated with slowed task RT. Higher dose oxcarbazepine significantly reduced IED frequency (p =.009) and improved task performance (β ± SE = −107.43 ± 39.54 ms, p =.007). These results emphasize the neurocognitive consequences of IEDs independent of seizure effects. Furthermore, we demonstrate that inhibition of IEDs following treatment with select ASMs is associated with improved neurocognitive function. [ABSTRACT FROM AUTHOR]
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- 2023
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8. Electronic consultation use by advanced practice nurses in older adult care—A descriptive study of service utilization data.
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Hakimjavadi, Ramtin, Karunananthan, Sathya, Levi, Cheryl, LeBlanc, Kimberly, Guglani, Sheena, Helmer‐Smith, Mary, Keely, Erin, and Liddy, Clare
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MEDICAL consultation ,CARDIOLOGY ,ENDOCRINOLOGY ,RESEARCH methodology ,DERMATOLOGY ,HEMATOLOGY ,RETROSPECTIVE studies ,GASTROENTEROLOGY ,MEDICAL care use ,GERIATRIC nursing ,RESEARCH funding ,DESCRIPTIVE statistics ,MEDICAL referrals ,QUESTIONNAIRES ,NURSE practitioners ,PHYSICIANS ,TELEMEDICINE - Abstract
Aims and Objectives: To describe characteristics of service utilization by advanced practice nurses (APNs) employing an electronic consultation (eConsult) service in their care for older adults. Background: Canada's aging population is projected to place unprecedented demands on the healthcare system. APNs, which include clinical nurse specialists (CNSs) and nurse practitioners (NPs), are nurses with advanced knowledge who can independently provide age‐appropriate care. eConsult is a secure web‐based platform enabling asynchronous, provider‐to‐provider communication. APNs can send and receive eConsults to address patient‐specific concerns. Methods: This is a retrospective analysis of eConsult utilization and user survey data for cases completed in 2019, reported in line with the STROBE guidelines. Eligible eConsults included those that had APN involvement (as a referrer or responder) and were concerning an older patient (≥65 years). Descriptive statistics were used to analyse service utilization and survey response data. Results: Of 430 eligible eConsults, 421 (97.9%) were initiated by NPs and the rest by physicians. 23 (5.3%) were received by a CNS, of which 14 (3.3%) involved an NP‐to‐CNS exchange. Median specialist response interval was 0.9 days. 53% of eConsults was for dermatology, haematology, cardiology, gastroenterology and endocrinology. 73% of eConsults avoided a face‐to‐face referral after the consultation. In 90% of eConsults, APNs rated the service as helpful and/or educational. Conclusions: Through eConsult, APNs can collaborate with each other and physicians to access and provide a breadth of advice facilitating timely specialist‐informed care for older patients, thus helping to alleviate some of the demands placed on the healthcare system. Relevance to Clinical Practice: There is an opportunity for APNs to further adopt eConsult into their clinical practice, and this can, in turn, support the integration of the APN role in the health workforce. Patient or Public Contribution: Current APN eConsult users were involved in the study design and interpretation of results. [ABSTRACT FROM AUTHOR]
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- 2023
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9. Chronic tracheostomy care of ventilator‐dependent and ‐independent children: Clinical practice patterns of pediatric respirologists in a publicly funded (Canadian) healthcare system.
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St‐Laurent, Aaron, Zielinski, David, Qazi, Adam, AlAwadi, Aceel, Almajed, Athari, Adamko, Darryl J., Alabdoulsalam, Tareq, Chiang, Jackie, Derynck, Michael, Gerdung, Chris, Kam, Karen, Katz, Sherri L., MacLusky, Ian, Mehta, Kevan, Mateos, Dimas, Nguyen, The Thanh D., Praud, Jean‐Paul, Proulx, Frederic, Seear, Michael, and Smith, Mary Jane
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- 2023
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10. Interictal discharges delay target‐directed eye movements and impair attentional set‐shifting in children with epilepsy.
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Warsi, Nebras M., Wong, Simeon M., Suresh, Hrishikesh, Arski, Olivia N., Yan, Han, Ebden, Mark, Kerr, Elizabeth, Smith, Mary Lou, Ochi, Ayako, Otsubo, Hiroshi, Sharma, Roy, Jain, Puneet, Donner, Elizabeth J., Snead, O. Carter, and Ibrahim, George M.
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CHILDREN with epilepsy ,CHILDHOOD epilepsy ,EYE movements ,EPILEPTIFORM discharges ,CHILD psychology - Abstract
Objective: The theory of transient cognitive impairment in epilepsy posits that lapses in attention result from ephemeral disruption of attentional circuitry by interictal events. Eye movements are intimately associated with human attention and can be monitored in real time using eye‐tracking technologies. Here, we sought to characterize the associations between interictal epileptiform discharges (IEDs), gaze, and attentional behavior in children with epilepsy. Methods: Eleven consecutive children undergoing invasive monitoring with stereotactic electrodes for localization‐related epilepsy performed an attentional set‐shifting task while tandem intracranial electroencephalographic signals and eye‐tracking data were recorded. Using an established algorithm, IEDs were detected across all intracranial electrodes on a trial‐by‐trial basis. Hierarchical mixed‐effects modeling was performed to delineate associations between trial reaction time (RT), eye movements, and IEDs. Results: Hierarchical mixed‐effects modeling revealed that both the presence of an IED (β ± SE = 72.74 ± 24.21 ms, p =.003) and the frequency of epileptiform events (β ± SE = 67.54 ± 17.30 ms, p <.001) were associated with prolonged RT on the attentional set‐shifting task. IED occurrence at the time of stimulus presentation was associated with delays in gaze initiation toward the visual targets (p =.017). Significance: The occurrence of epileptiform activity in close temporal association with stimulus presentation is associated with delays in target‐directed gaze and prolonged response time, hallmarks of momentary lapses in attention. These findings provide novel insights into the mechanisms of transient impairments in children and support the use of visual tracking as a correlate of higher order attentional behavior. [ABSTRACT FROM AUTHOR]
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- 2022
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11. Epilepsy disrupts hippocampal phase precision and impairs working memory.
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Arski, Olivia N., Wong, Simeon M., Warsi, Nebras M., Pang, Elizabeth, Kerr, Elizabeth, Smith, Mary Lou, Taylor, Margot J., Dunkley, Benjamin T., Ochi, Ayako, Otsubo, Hiroshi, Sharma, Roy, Yau, Ivanna, Jain, Puneet, Donner, Elizabeth J., Snead, O. Carter, and Ibrahim, George M.
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SHORT-term memory ,CHILDREN with epilepsy ,HIPPOCAMPUS (Brain) ,CHILDHOOD epilepsy ,EPILEPSY - Abstract
Objective: Working memory deficits are prevalent in childhood epilepsy. Working memory processing is thought to be supported by the phase of hippocampal neural oscillations. Disruptions in working memory have previously been linked to the occurrence of transient epileptic activity. This study aimed to resolve the associations between oscillatory neural activity, transient epileptiform events, and working memory in children with epilepsy. Methods: Intracranial recordings were acquired from stereotactically implanted electrodes in the hippocampi, epileptogenic zones, and working memory‐related networks of children with drug‐resistant epilepsy during a 1‐back working memory task. Interictal epileptic activity was captured using automated detectors. Hippocampal phase and interregional connectivity within working memory networks were indexed by Rayleigh Z and the phase difference derivative, respectively. Trials with and without transient epileptiform events were compared. Results: Twelve children (mean age = 14.3 ± 2.8 years) with drug‐resistant epilepsy were included in the study. In the absence of transient epileptic activity, significant delta and theta hippocampal phase resetting occurred in response to working memory stimulus presentation (Rayleigh z‐score = 9, Rayleigh z‐score = 8). Retrieval trials that were in phase with the preferred phase angle were associated with faster reaction times (p =.01, p =.03). Concurrently, delta and theta coordinated interactions between the hippocampi and working memory‐related networks were enhanced (phase difference derivative [PDD] z‐scores = 6–11). During retrieval trials with pre‐encoding or pre‐retrieval transient epileptic activity, phase resetting was attenuated (Rayleigh z‐score = 5, Rayleigh z‐score = 1), interregional connectivity was altered (PDD z‐scores = 1–3), and reaction times were prolonged (p =.01, p =.03). Significance: This work highlights the role of hippocampal phase in working memory. We observe poststimulus hippocampal phase resetting coincident with enhanced interregional connectivity. The precision of hippocampal phase predicts optimal working memory processing, and transient epileptic activity prolongs working memory processing. These findings can help guide future treatments aimed at restoring memory function in this patient population. [ABSTRACT FROM AUTHOR]
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- 2022
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12. Developing clinical reasoning: An introduction for pharmacy preceptors.
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Smith, Kathryn J., Childs‐Kean, Lindsey M., and Smith, Mary Douglass
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MEDICAL logic ,PHARMACY ,PROBLEM solving ,CRITICAL thinking ,DRUG therapy - Abstract
Clinical reasoning is the thinking and decision‐making process undertaken to solve and manage a clinical problem. This process differs from problem solving or critical thinking and refers to the process of identifying drug therapy problems and optimizing therapeutic options. While clinical reasoning is a professional expectation of pharmacists in practice, pharmacy preceptors may find it difficult to teach and assess the complexity and nuances of clinical reasoning. The purpose of this guide is to briefly review clinical reasoning processes in pharmacy practice and to summarize practical strategies for preceptors to implement with their learners to promote the development of clinical reasoning. [ABSTRACT FROM AUTHOR]
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- 2022
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13. Family satisfaction in a neuro trauma ICU.
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Peterson, Matthew J., Woerhle, Theo, Harry, Melissa, Heger, Anna Mae C., Gerchman‐Smith, Mary, Vogel, Linda, Hughes, Carolyn, and McCarty, Catherine
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NOISE control ,NERVOUS system injuries ,INTENSIVE care units ,PRIVACY ,HOSPITAL building design & construction ,HOSPITAL patients ,LEADERSHIP ,SATISFACTION ,PATIENTS ,FAMILY attitudes ,QUALITY assurance ,EMERGENCY medical services ,CRITICAL care medicine ,QUESTIONNAIRES ,DESCRIPTIVE statistics ,MEDICAL ethics ,ROOMS ,COMMUNICATION ,WOUNDS & injuries ,PATIENT care ,PATIENT-professional relations ,DATA analysis software ,THEMATIC analysis ,MEDICAL coding - Abstract
Objective: The purpose of this quality improvement initiative was to evaluate satisfaction of family members of patients in a neuro trauma ICU (NTICU). Methods: Adult patients (age 18+) admitted to the NTICU for at least 24 hours between June 2017 and November 2018 were identified. Near or at the time of discharge from the NTICU, the health unit coordinator or registered nurse identified the family member who was either the next‐of‐kin, surrogate decision‐maker, or person who had been most frequently present at the patient's bedside. This person was provided a packet containing a letter of consent and the Critical Care Family Satisfaction Survey (CCFSS). Results: Surveys were completed by 78 family members, the majority of whom were the wife of the patient (n = 35, 44%), 60 years and older (n = 48, 60.8%). Fifty‐seven percent of patients (n = 45) were in the ICU less than 3 days and 59% (n = 47) of medical events were injury‐related. Total CCFSS scores ranged from 69 to 100 (median 95). The item with the largest number of dissatisfied responses was "Noise level in the critical care unit" (n = 4, 5.3% not satisfied). Open‐ended question comments were primarily positive (n = 60, 66%), with 32% (n = 29) representing areas for improvement. Conclusions: Results of this satisfaction survey have been disseminated to leadership and have been taken into consideration in the planning of a new hospital building currently being built, including ICU patient rooms that allow for more privacy and reduced noise, and more comfortable family rooms. Relevance to Clinical Practice: Family members are a very useful source of feedback for ICU care. Several concerns identified by family members in this study are likely to be relevant to other sites. These included: communication between health care providers and family about patient status, noise in the ICU, peaceful waiting areas for family, and slow transfers. [ABSTRACT FROM AUTHOR]
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- 2022
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14. Evaluating peripheral intravascular catheter insertion, maintenance and removal practices in small hospitals using a standardized audit tool.
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Hoskins, Alex, Worth, Leon J, Malloy, Michael J, Smith, Mary, Atkins, Sue, and Bennett, Noleen
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PROFESSIONAL practice ,HOSPITALS ,AUDITING ,OPERATING rooms ,PERIPHERAL central venous catheterization ,MEDICAL device removal ,HOSPITAL emergency services ,RISK assessment ,PHLEBITIS ,CATHETERIZATION complications ,HOSPITAL nursing staff ,QUALITY assurance ,DESCRIPTIVE statistics ,HOSPITAL wards ,CATHETERIZATION ,DISEASE risk factors - Abstract
Aim: The aim of this study was to evaluate clinical practice about peripheral intravenous catheter (PIVC) insertion, maintenance and removal in a cohort of Victorian hospitals. Design: A standardized PIVC audit tool was developed, and results from point prevalent surveys were conducted. Methods: Hospitalized patients requiring a PIVC insertion were eligible for audit. Audit data submitted between 2015 and 2019 were extracted for the current study. Results: 3566 PIVC insertions in 15 Victorian public hospitals were evaluated. 57.6% of PIVCs were inserted in wards, 18.7% in operating theatres and 11.6% in Emergency Departments (ED). 45.2% were inserted by nurses and 38.2% by medical staff. The preferred site for insertion was the dorsum of the hand and forearm (58.8%). 22.6% did not report a visual infusion phlebitis score at least daily, and 48% did not document a daily dressing assessment. Reasons for PIVC removal included no longer required (63%) and phlebitis (4.8%). No bloodstream infections were reported. [ABSTRACT FROM AUTHOR]
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- 2022
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15. Goat Medicine
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Smith, Mary C., primary and Sherman, David M., additional
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- 2009
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16. The First Episode Rapid Early Intervention for Eating Disorders ‐ Upscaled study: Clinical outcomes.
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Austin, Amelia, Flynn, Michaela, Shearer, James, Long, Mike, Allen, Karina, Mountford, Victoria A., Glennon, Danielle, Grant, Nina, Brown, Amy, Franklin‐Smith, Mary, Schelhase, Monique, Jones, William Rhys, Brady, Gabrielle, Nunes, Nicole, Connan, Frances, Mahony, Kate, Serpell, Lucy, and Schmidt, Ulrike
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EATING disorders ,TREATMENT effectiveness ,YOUNG adults ,ANOREXIA nervosa ,ELECTRONIC records - Abstract
Background: First Episode Rapid Early Intervention for Eating Disorders (FREED) is a service model and care pathway for emerging adults aged 16 to 25‐years with a recent onset eating disorder (ED) of <3 years. A previous single‐site study suggests that FREED significantly improves clinical outcomes compared to treatment‐as‐usual (TAU). The present study (FREED‐Up) assessed the scalability of FREED. A multi‐centre quasi‐experimental pre‐post design was used, comparing patient outcomes before and after implementation of FREED in participating services. Methods: FREED patients (n = 278) were consecutive, prospectively ascertained referrals to four specialist ED services in England, assessed at four time points over 12 months on ED symptoms, mood, service utilization and cost. FREED patients were compared to a TAU cohort (n = 224) of similar patients, identified retrospectively from electronic patient records in participating services. All were emerging adults aged 16–25 experiencing a first episode ED of <3 years duration. Results: Overall, FREED patients made significant and rapid clinical improvements over time. 53.2% of FREED patients with anorexia nervosa reached a healthy weight at the 12‐month timepoint, compared to only 17.9% of TAU patients (X2 [1, N = 107] = 10.46, p <.001). Significantly fewer FREED patients required intensive (i.e., in‐patient or day‐patient) treatment (6.6%) compared to TAU patients (12.4%) across the follow‐up period (X2 [1, N = 40] = 4.36, p =.037). This contributed to a trend in cost savings in FREED compared to TAU (−£4472, p =.06, CI −£9168, £233). Discussion: FREED is robust and scalable and is associated with substantial improvements in clinical outcomes, reduction in inpatient or day‐patient admissions, and cost‐savings. [ABSTRACT FROM AUTHOR]
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- 2022
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17. Patient perspectives on surveillance after head and neck cancer treatment: A systematic review.
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McLaren, Oliver, Perkins, Clare, Zhu, Yinan, Smith, Mary, and Williams, Richard
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PATIENTS' attitudes ,HEAD & neck cancer ,CANCER treatment - Abstract
Objectives: Current guidelines advise post‐treatment surveillance of head and neck cancer (HNC) patients should involve scheduled appointments with a variety of practitioners. Increasing numbers of HNC survivors raise the burden to provide efficient and effective care. With resource limitation, there is growing importance to identify how surveillance can be justified and optimised for survivors. This systematic review presents current evidence on patient perspectives of post‐treatment HNC surveillance, aiming to inform future work putting patient priorities at the forefront of surveillance planning. Design: MEDLINE, Embase, the Cochrane Library, NIHR Dissemination Centre, The Kings Fund Library, Clinical Evidence, NHS Evidence and NICE Clinical Evidence were searched to identify publications regarding patient perspectives of HNC post‐treatment surveillance. Studies not reporting on both surveillance and patient perspectives were excluded. Results: Three thousand five hundred fifty‐eight citations were screened and 49 full‐text articles reviewed. Sixteen studies were included in the final review. Three authors reviewed all articles prior to final analysis to ensure all met inclusion criteria. Most evidence was low quality. Study models returned included cross‐sectional surveys, structured interviews and one systematic review. Overall, positive perceptions of HNC surveillance were mostly related to increased reassurance. Negative perceptions predominantly focused on anxiety and fear of recurrence, but a lack of psychological support and inadequate access to certain aspects of care were also reported. Conclusions: This systematic review demonstrates that patients' perceptions of surveillance after HNC are mostly positive, feeling it provides reassurance. However, several studies report unmet needs, particularly regarding managing anxiety. [ABSTRACT FROM AUTHOR]
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- 2021
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18. Long-term outcomes of children with drug-resistant epilepsy across multiple cognitive domains.
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Puka, Klajdi and Smith, Mary Lou
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COGNITION , *CHILDHOOD epilepsy , *COGNITIVE ability , *TEMPORAL lobectomy , *K-means clustering , *EPILEPSY surgery , *MEMORY , *RESEARCH , *RESEARCH methodology , *LANGUAGE & languages , *MEDICAL cooperation , *EVALUATION research , *NEUROPSYCHOLOGICAL tests , *COMPARATIVE studies , *AGE factors in disease , *RESEARCH funding , *SEIZURES (Medicine) - Abstract
Aim: To simultaneously evaluate long-term outcomes of children with drug-resistant epilepsy (DRE) across multiple cognitive domains and compare the characteristics of participants sharing a similar cognitive profile.Method: Participants were adolescents and young adults (AYAs) diagnosed with DRE in childhood, who completed a comprehensive neuropsychological battery evaluating intelligence, memory, academic, and language skills at the time of surgical candidacy evaluation and at long-term follow-up (4-11y later). Hierarchical k-means clustering identified subgroups of AYAs showing a unique pattern of cognitive functioning in the long-term.Results: Participants (n=93; mean age 20y 1mo [standard deviation {SD} 4y 6mo]; 36% male) were followed for 7 years (SD 2y 4mo), of whom 65% had undergone resective epilepsy surgery. Two subgroups with unique patterns of cognitive functioning were identified, which could be broadly categorized as 'impaired cognition' (45% of the sample) and 'average cognition' (55% of the sample); the mean z-score across cognitive measures at follow-up was -1.86 (SD 0.62) and -0.23 (SD 0.54) respectively. Surgical and non-surgical patients were similar with respect to seizure control and their long-term cognitive profile. AYAs in the average cognition cluster were more likely to have better cognition at baseline, an older age at epilepsy onset, and better seizure control at follow-up.Interpretation: The underlying abnormal neural substrate and seizure control were largely associated with long-term outcomes across cognitive domains. [ABSTRACT FROM AUTHOR]- Published
- 2021
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19. Patient perspectives on chemotherapy de‐escalation in breast cancer.
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Rocque, Gabrielle B., Williams, Courtney P., Andrews, Courtney, Childers, Timothy C., Wiseman, Kimberly D., Gallagher, Kathleen, Tung, Nadine, Balch, Alan, Lawhon, Valerie M, Ingram, Stacey A, Brown, Thelma, Kaufmann, Tara, Smith, Mary L., DeMichele, Angela, Wolff, Antonio C., and Wagner, Lynne
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CANCER chemotherapy ,COVID-19 pandemic ,SURVIVAL rate ,BREAST cancer ,PHYSICIANS - Abstract
Background: Given excellent survival outcomes in breast cancer, there is interest in de‐escalating the amount of chemotherapy delivered to patients. This approach may be of even greater importance in the setting of the COVID‐19 pandemic. Methods: This concurrent mixed methods study included (1) interviews with patients and patient advocates and (2) a cross‐sectional survey of women with breast cancer served by a charitable nonprofit organization. Questions evaluated interest in de‐escalation trial participation, perceived barriers/facilitators to participation, and language describing de‐escalation. Results: Sixteen patient advocates and 24 patients were interviewed. Key barriers to de‐escalation included fear of recurrence, worry about decision regret, lack of clinical trial interest, and dislike for focus on less treatment. Facilitators included trust in physician recommendation, toxicity avoidance, monitoring for progression, perception of good prognosis, and impact on daily life. Participants reported that the COVID‐19 pandemic made them more likely to avoid chemotherapy if possible. Of 91 survey respondents, many (43%) patients would have been unwilling to participation in a de‐escalation clinical trial. The most commonly reported barrier to participation was fear of recurrence (85%). Few patients (19%) considered clinical trials themselves as a barrier to de‐escalation trial participation. The most popular terminology describing chemotherapy de‐escalation was "lowest effective chemotherapy dose" (53%); no patients preferred the term "de‐escalation." Conclusions: Fear of recurrence is a common concern among breast cancer survivors and patient advocates, contributing to resistance to de‐escalation clinical trial participation. Additional research is needed to understand how to engage patients in de‐escalation trials. [ABSTRACT FROM AUTHOR]
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- 2021
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20. Assessing the impact of First Episode Rapid Early Intervention for Eating Disorders on duration of untreated eating disorder: A multi‐centre quasi‐experimental study.
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Flynn, Michaela, Austin, Amelia, Lang, Katie, Allen, Karina, Bassi, Ranjeet, Brady, Gabrielle, Brown, Amy, Connan, Frances, Franklin‐Smith, Mary, Glennon, Danielle, Grant, Nina, Jones, William Rhys, Kali, Kuda, Koskina, Antonia, Mahony, Kate, Mountford, Victoria, Nunes, Nicole, Schelhase, Monique, Serpell, Lucy, and Schmidt, Ulrike
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DIAGNOSIS of eating disorders ,TREATMENT of eating disorders ,HOSPITAL emergency services ,DISEASE duration ,DESCRIPTIVE statistics ,EARLY medical intervention - Abstract
Background: Duration of untreated eating disorder (DUED), that is, the time between illness onset and start of first evidence‐based treatment, is a key outcome for early intervention. Internationally, reported DUED ranges from 2.5 to 6 years for different eating disorders (EDs). To shorten DUED, we developed FREED (First Episode Rapid Early Intervention for EDs), a service model and care pathway for emerging adults with EDs. Here, we assess the impact of FREED on DUED in a multi‐centre study using a quasi‐experimental design. Methods: Two hundred and seventy‐eight patients aged 16–25, with first episode illness of less than 3 years duration, were recruited from specialist ED services and offered treatment via FREED. These were compared to 224 patients, of similar age and illness duration, seen previously in participating services (treatment as usual [TAU]) on DUED, waiting times and treatment uptake. Results: FREED patients had significantly shorter DUED and waiting times than TAU patients. On average, DUED was reduced by ∼4 months when systemic delays were minimal. Furthermore, 97.8% of FREED patients took up treatment, versus 75.4% of TAU. Discussion: Findings indicate that FREED significantly improves access to treatment for emerging adults with first episode ED. FREED may reduce distress, prevent deterioration and facilitate recovery. Highlights: This study is a large‐scale replication of an earlier single‐centre pilot study of First Episode Rapid Early Intervention for Eating Disorders (FREED). Findings indicate that, as in the pilot study, FREED significantly reduces duration of untreated eating disorder and is associated with significantly shorter wait times for both assessment and treatment when implemented at scaleDifferences between groups were more pronounced when systemic delays were minimalThe proportion of FREED patients taking up treatment was significantly higher than in treatment as usual, suggesting that a shorter interval between help‐seeking from primary care and an offer of specialist assessment/treatment has clear down‐stream benefits [ABSTRACT FROM AUTHOR]
- Published
- 2021
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21. Exploring the use of individualised patient‐reported outcome measures in eating disorders: Validation of the Psychological Outcome Profiles.
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Austin, Amelia, Potterton, Rachel, Flynn, Michaela, Richards, Katie, Allen, Karina, Grant, Nina, Glennon, Danielle, Mountford, Victoria A., Franklin‐Smith, Mary, Schelhase, Monique, Jones, William R., Serpell, Lucy, Mahoney, Kate, Brady, Gaby, Nunes, Nicole, Kali, Kuda, Connan, Frances, and Schmidt, Ulrike
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EATING disorders ,HEALTH outcome assessment ,PSYCHOLOGICAL tests ,RESEARCH methodology evaluation ,DISEASE duration ,INDIVIDUALIZED medicine - Abstract
Rationale: Psychotherapies for eating disorders (EDs) are routinely assessed using standardised patient‐reported outcome measures (PROMs). PROMs have been criticised for their lack of patient centeredness and clinical utility. The Psychological Outcome Profiles (PSYCHLOPS) is an individualised PROM that allows patients to specify their own outcomes. Aims: (1) To validate the use of the PSYCHLOPS in ED treatment, and (2) to identify patient concerns beyond those measured by common ED PROMs. Methods: Two hundred and seventy‐eight emerging adult patients, presenting with a first‐episode ED (aged 16–25, illness duration <3 years) completed the PSYCHLOPS and two standardised ED PROMs (the EatingDisorder Examination Questionnaire [EDE‐Q] and the Clinical Impairment Assessment Questionnaire [CIA]) at four time points across 12 months. Psychometrics of the PSYCHLOPS were assessed quantitatively against the EDE‐Q and CIA. Content analysis assessed unique patient concerns identified by PSYCHLOPS. Results: The PSYCHLOPS had adequate to good psychometric properties. A total of 53.3% of participants reported a concern not addressed by the EDE‐Q or the CIA, the most common being depression/anxiety, academic problems, treatment concerns and disturbed sleep. Discussion: PROMs can be complemented by the PSYCHLOPS to identify problems specific to an individual's context. As ED patients are typically ambivalent about change, understanding their concerns is vital in building motivation for change. Highlights: The psychometric properties of the Psychological Outcome Profiles (PSYCHLOPS) are acceptable and broadly comparable to the Eating Disorder Examination Questionnaire and Clinical Impairment Assessment QuestionnaireThe PSYCHLOPS may effectively complement traditional patient reported outcome measures to allow for the identification of problems specific to an individual's contextClinical applications include collaborative treatment planning, uncovering sources of/obstacles to patient treatment motivation and facilitation of a precision medicine approach. [ABSTRACT FROM AUTHOR]
- Published
- 2021
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22. P913: LOW‐DOSE BELANTAMAB MAFODOTIN (BELAMAF) IN COMBINATION WITH NIROGACESTAT VS BELAMAF MONOTHERAPY IN PATIENTS WITH RELAPSED/REFRACTORY MULTIPLE MYELOMA (RRMM): PHASE 1/2 DREAMM‐5 PLATFORM SUB‐STUDY 3.
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Callander, Natalie, Richardson, Paul, Hus, Marek, Ribrag, Vincent, Martinez‐Lopez, Joaquín, Kim, Kihyun, Hoon Lee, Jae, Dimopoulos, Meletios A., Schjesvold, Fredrik, Facon, Thierry, Jo, Jae‐Cheol, Min, Chang‐Ki, Mielnik, Michał, Cheng, Shinta, Smith, Mary, Breitbach, Caroline J., Brawley, Chris, Sembhi, Harjeet, Lamacchia, John, and Grosicki, Sebastian
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- 2023
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23. Changes in caregiver depression, anxiety, and satisfaction with family relationships in families of children who did and did not undergo resective epilepsy surgery.
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Phillips, Natalie L., Widjaja, Elysa, and Smith, Mary Lou
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ANXIETY ,MENTAL depression ,FAMILY relations ,FAMILIES ,TEMPORAL lobectomy ,EPILEPSY surgery - Abstract
Objective: To evaluate longitudinal changes in caregiver depression, anxiety, and family relationships following resective surgery for pediatric drug‐resistant epilepsy (DRE). Methods: This multicenter cohort study involved 177 caregivers of children with DRE aged 4‐18 years (63 surgical and 114 nonsurgical). Caregivers completed measures of depression (Quick Inventory of Depressive Symptomatology), anxiety (Generalized Anxiety Disorder 7‐item scale), and satisfaction with family relationships (Family Adaptability, Partnership, Growth, Affective, and Resolve scale) at baseline, 6 months, and 1 year. Additional data collected at baseline included child, caregiver, and family sociodemographic and clinical factors as well as family environment (demands and resources). Results: At 1 year, 64% and 27% of surgical and nonsurgical patients were seizure‐free, respectively. Linear mixed‐effects models found a reduction in caregiver depression (b = −0.85, P =.004) and anxiety (b = −1.09, P =.003), but not family satisfaction (b = 0.18, P =.31) over time. There was no effect of treatment. When seizure outcome was added to the model, seizure freedom was associated with fewer depressive symptoms (b = −1.15, P =.005) and greater family satisfaction (b = 0.65, P =.006), but not anxiety (b = −0.41, P =.42). A greater proportion of caregivers of patients who achieved seizure freedom (32%) versus continued seizures (18%) reported clinically meaningful improvement in depression at 1 year (P =.03). Lower baseline depression (β = 0.42, P <.001), greater family resources (β = −0.18, P =.04), and male caregiver (β = 0.15, P =.02) predicted lower caregiver depression, and lower baseline anxiety (β = 0.47, P <.001), greater family resources (β = −0.24, P =.01), and higher education (β = −0.13, P =.04) predicted lower caregiver anxiety at 1 year. Baseline functioning was the only predictor of family relationships at 1 year (β = 0.49, P <.001). Significance: Caregivers of children who achieved seizure freedom, irrespective of surgical treatment, report fewer depressive symptoms and greater satisfaction with family relationships. Baseline functioning is the strongest predictor of outcome; however, caregivers of families with fewer resources and supports are also at risk of poor psychosocial outcomes. [ABSTRACT FROM AUTHOR]
- Published
- 2020
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24. Self‐reported quality of life and degree of youth‐parent agreement: A long‐term follow‐up of childhood‐onset epilepsy.
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Puka, Klajdi, Ferro, Mark A., Camfield, Carol S., Levin, Simon D., Smith, Mary Lou, Wiebe, Samuel, Zou, Guangyong, and Speechley, Kathy N.
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QUALITY of life ,EPILEPSY ,INTRACLASS correlation ,HOME environment ,CHILDHOOD epilepsy ,PARTIAL epilepsy ,LENNOX-Gastaut syndrome - Abstract
Objective: To prospectively delineate self‐reported health‐related quality of life (HRQOL) of adolescents and young adults (AYAs) 8 and 10 years after an epilepsy diagnosis and evaluate the degree of AYA‐parent agreement in ratings of AYA's HRQOL. Methods: Data came from the Health‐Related Quality of Life in Children with Epilepsy Study (HERQULES), a 10‐year longitudinal study of children, aged 4‐12 years, with newly diagnosed epilepsy. Epilepsy‐specific HRQOL was self‐reported by AYA 8 and 10 years after diagnosis and by parents at multiple time points throughout the 10‐year follow‐up. Measurers of HRQOL over time were analyzed using a linear mixed‐effect model approach. AYA‐parent agreement was evaluated using intraclass correlation coefficient (ICC) and Bland‐Altman plots. Results: A total of 165 AYAs participated at long‐term follow‐up. There was considerable heterogeneity among AYA's HRQOL, and as a group, there was no significant change in HRQOL from the 8‐ to 10‐year follow‐up. Household income at the time of diagnosis, seizure control at follow‐up, and a history of emotional problems (anxiety/depression) were independent predictors of HRQOL at follow‐up. AYA‐parent agreement on AYA's HRQOL was moderate (ICC 0.62, 95% CI 0.51‐0.71), although considerable differences were observed at the individual level. AYA‐parent agreement varied with AYA's and parent's age, seizure control, and family environment. Significance: In the long‐term after a diagnosis of epilepsy, AYAs report stable HRQOL over time at the group level, although notable individual differences exist. Seizure control, anxiety/depression, and family environment meaningfully impact AYA's long‐term HRQOL. AYA and parent reports on HRQOL are similar at the group level, although they cannot be used interchangeably, given the large individual differences observed. [ABSTRACT FROM AUTHOR]
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- 2020
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25. Family resources moderate the relationship between seizure control and health‐related quality of life in children with drug‐resistant epilepsy.
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Phillips, Natalie L., Widjaja, Elysa, and Smith, Mary Lou
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CHILDREN with epilepsy ,QUALITY of life ,SEIZURES (Medicine) ,CHILDHOOD epilepsy ,QUALITY control ,HOME environment ,TEMPORAL lobectomy ,DIGITAL rectal examination - Abstract
Objective: Pediatric drug‐resistant epilepsy (DRE) is associated with poor health‐related quality of life (HRQOL). Achieving seizure control, however, does not improve HRQOL in all children. This study sought to evaluate whether (1) baseline caregiver and family factors are associated with child HRQOL at 1‐year follow‐up over and above epilepsy characteristics, treatment, and seizure outcome; and (2) baseline family factors moderate the association between seizure outcome and child HRQOL at 1‐year follow‐up. Methods: This multicenter longitudinal cohort study recruited 152 children with DRE who were being evaluated for surgical candidacy. Child HRQOL was rated by caregivers using the Quality of Life in Childhood Epilepsy Questionnaire at baseline and 1‐year follow‐up. Additional data collected at baseline included child epilepsy characteristics, caregiver demographics, caregiver mood, and family environment. Results: Seizure freedom was achieved in 68% and 28% of patients 1 year after surgery and medical treatment, respectively. Caregiver and family factors were not associated with higher child HRQOL at follow‐up after accounting for epilepsy characteristics, treatment, seizure outcome, and baseline child HRQOL, F11, 131 = 1.34, P =.21, ΔR2 =.04. Family resources moderated the association between seizure outcome and child HRQOL at follow‐up (b =.41, 95% confidence interval [CI] = 0.09‐0.74, P =.03); seizure freedom was strongly associated with higher HRQOL when family resources were high (b = 13.50, 95% CI = 8.35‐18.54, P <.001), relative to when family resources were low (b = 5.17, 95% CI = −0.18 to 10.52, P =.06). Family relationships and demands did not moderate the relationship between seizure outcome and HRQOL. Significance: Achieving seizure freedom was associated with better HRQOL in children with DRE, but this association was reduced for those children who presented with limited family resources. These results highlight the importance of assessing the family environment during presurgical evaluation and implementing early family‐based intervention and supports to promote better outcomes for children in the long term. [ABSTRACT FROM AUTHOR]
- Published
- 2020
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26. Temporal‐plus epilepsy in children: A connectomic analysis in magnetoencephalography.
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Martire, Daniel J., Wong, Simeon, Workewych, Adriana, Pang, Elizabeth, Boutros, Sarah, Smith, Mary Lou, Ochi, Ayako, Otsubo, Hiroshi, Sharma, Roy, Widjaja, Elysa, Snead, O. Carter, Donner, Elizabeth, and Ibrahim, George M.
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CHILDHOOD epilepsy ,STATISTICAL bootstrapping ,RESAMPLING (Statistics) ,ETIOLOGY of diseases ,TEMPORAL lobe ,TEMPORAL lobectomy - Abstract
Objective: Seizure recurrence following surgery for temporal lobe (TL) epilepsy may be related to extratemporal epileptogenic foci, so‐called temporal‐plus (TL+) epilepsy. Here, we sought to leverage whole brain connectomic profiling in magnetoencephalography (MEG) to identify neural networks indicative of TL+ epilepsy in children. Methods: Clinical and MEG data were analyzed for 121 children with TL and TL+ epilepsy spanning 20 years at the Hospital for Sick Children. Resting‐state connectomes were derived using the weighted phase lag index from neuromagnetic oscillations. Multidimensional associations between patient connectomes, TL versus TL+ epilepsy, seizure freedom, and clinical covariates were performed using a partial least squares (PLS) analysis. Bootstrap resampling statistics were performed to assess statistical significance. Results: A single significant latent variable representing 66% of the variance in the data was identified with significant contributions from extent of epilepsy (TL vs TL+), duration of illness, and underlying etiology. This component was associated with significant bitemporal and frontotemporal connectivity in the theta, alpha, and beta bands. By extracting a brain score, representative of the observed connectivity profile, patients with TL epilepsy were dissociated from those with TL+, independent of their postoperative seizure outcome. Significance: By analyzing 121 connectomes derived from MEG data using a PLS approach, we find that connectomic profiling could dissociate TL from TL+ epilepsy. These findings may inform patient selection for resective procedures and guide decisions surrounding invasive monitoring. [ABSTRACT FROM AUTHOR]
- Published
- 2020
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27. Trajectories of quality of life 10 years following a diagnosis of epilepsy in childhood.
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Puka, Klajdi, Ferro, Mark A., Camfield, Carol S., Levin, Simon D., Smith, Mary Lou, Wiebe, Samuel, Zou, Guangyong, Anderson, Kelly K., and Speechley, Kathy N.
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CHILDHOOD epilepsy ,QUALITY of life ,DIAGNOSIS of epilepsy ,FAMILIES ,HOME environment ,LENNOX-Gastaut syndrome - Abstract
Objective: This study estimated trajectories of health‐related quality of life (HRQOL) over a 10‐year period among children newly diagnosed with epilepsy. We also modeled the characteristics of children, parents, and families associated with each identified trajectory. Methods: Data came from the HERQULES (Health‐Related Quality of Life in Children With Epilepsy Study), a Canada‐wide prospective cohort study of children (aged 4‐12 years) with newly diagnosed epilepsy. Parents reported on their children's HRQOL at diagnosis, and at 0.5‐, 1‐, 2‐, 8‐, and 10‐year follow‐ups using the Quality of Life in Childhood Epilepsy Questionnaire–55. Trajectories of HRQOL were identified using latent class growth models. Characteristics of children, parents, and families at the time of diagnosis that were associated with each trajectory were identified using multinomial logistic regression. Results: A total of 367 children were included. Four unique HRQOL trajectories were identified; 11% of the cohort was characterized by low and stable scores, 18% by intermediate and stable scores, 35% by intermediate scores that increased then plateaued, and 43% by high scores that increased then plateaued. Absence of comorbidities, less severe epilepsy, and better family environment (greater satisfaction with family relationships and fewer family demands) at the time of diagnosis were associated with better long‐term HRQOL trajectories. Although the analyses used estimates for missing values and accounted for any nonrandom attrition, the proportion of children with poorer HRQOL trajectories may be underestimated. Significance: Children with new onset epilepsy are heterogenous and follow unique HRQOL trajectories over the long term. Overall, HRQOL improves for the majority in the first 2 years after diagnosis, with these improvements sustained over the long term. [ABSTRACT FROM AUTHOR]
- Published
- 2020
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28. Seizure freedom improves health-related quality of life after epilepsy surgery in children.
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Jain, Puneet, Smith, Mary Lou, Speechley, Kathy, Ferro, Mark, Connolly, Mary, Ramachandrannair, Rajesh, Almubarak, Salah, Andrade, Andrea, Widjaja, Elysa, and Pepsqol Study Team
- Subjects
- *
EPILEPSY surgery , *QUALITY of life , *CHILDHOOD epilepsy , *PEDIATRIC surgery , *SEIZURES (Medicine) , *TEMPORAL lobectomy , *ANTICONVULSANTS , *RESEARCH , *RESEARCH methodology , *EVALUATION research , *MEDICAL cooperation , *TREATMENT effectiveness , *COMPARATIVE studies , *RESEARCH funding , *QUESTIONNAIRES , *LONGITUDINAL method - Abstract
Aim: To determine whether epilepsy surgery improved health-related quality of life (HRQoL) and whether seizure freedom after surgery mediated the improvement in HRQoL.Method: This multicenter cohort study compared HRQoL after epilepsy surgery to pharmacological management in children with drug-resistant epilepsy (DRE). HRQoL was measured using the Quality of Life in Childhood Epilepsy (QOLCE) questionnaire at baseline and 1-year follow-up. The mediator between treatment type and HRQoL was seizure freedom.Results: Two hundred and thirty-seven patients were recruited (surgery group: n=147 [92 males, 45 females]; pharmacological group: n=90 [53 males, 37 females]). Mean age at seizure onset was 6 years (SD 4y 4mo) in the surgical group and 6 years 1 month (SD 4y) in the pharmacological group. The odds ratio of seizure freedom was higher for the surgery versus pharmacological group (β=4.24 [95% confidence interval {CI}: 2.26-7.93], p<0.001). Surgery had no direct effect on total QOLCE score at 1-year (β=0.24 [95% CI -2.04 to 2.51], p=0.839) compared to pharmacological management, but had an indirect effect on total QOLCE that was mediated by seizure freedom (β=0.92 [95% CI 0.19-1.65], p=0.013), adjusting for baseline total QOLCE score. Surgery had a direct effect on improving social function (p=0.043), and an indirect effect on improving physical function (p=0.016), cognition (p=0.042), social function (p=0.012) and behavior (p=0.032), mediated by seizure freedom.Interpretation: Greater seizure freedom achieved through epilepsy surgery mediated the improvement in HRQoL compared to pharmacological management in children with DRE.What This Paper Adds: Seizure freedom is higher after pediatric epilepsy surgery compared to pharmacologically managed epilepsy. Surgery indirectly improves health-related quality of life (HRQoL) mediated by seizure freedom compared to pharmacological management. Surgery has a direct effect on improving social function relative to pharmacological management. Baseline HRQoL was an important predictor of HRQoL after treatment. [ABSTRACT FROM AUTHOR]- Published
- 2020
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29. Patient familiarity with, understanding of, and preferences for clinical trial endpoints and terminology.
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Itzstein, Mitchell S., Railey, Elda, Smith, Mary L., White, Carol B., Sledge, George W., Howell, John R., Lawton, Wendy, Marinucci, Donna M., Unni, Nisha, Gerber, David E., von Itzstein, Mitchell S, and Sledge, George W Jr
- Subjects
METASTATIC breast cancer ,CLINICAL trial registries ,CLINICAL trials ,EXPERIMENTAL design ,DISEASE duration ,RESEARCH ,READABILITY (Literary style) ,RESEARCH methodology ,PATIENT satisfaction ,EVALUATION research ,MEDICAL cooperation ,COMPARATIVE studies ,TERMS & phrases ,RESEARCH funding ,PROBABILITY theory - Abstract
Background: Although there is increased attention to designing and explaining clinical trials in ways that are clinically meaningful for patients, there is limited information on patient preferences, understanding, and perceptions of this content.Methods: Maximum difference scaling (MaxDiff) methodology was used to develop a survey for assessing patients' understanding of 19 clinical terms and perceived importance of 9 endpoint surrogate phrases used in clinical trials and consent forms. The survey was administered electronically to individuals with metastatic breast cancer affiliated with the Metastatic Breast Cancer Alliance. Analyses were performed using Bayesian P values with statistical software.Results: Among 503 respondents, 77% had a college degree, 70% were diagnosed with metastatic disease ≥2 years before survey completion, and 77% had received ≥2 lines of systemic therapy. Less than 35% of respondents reported understanding "fairly well" the terms symptomatic progression, duration of disease control, time to treatment cessation, and endpoints. Income level and time since onset of metastatic disease correlated with comprehension. Patients who had received ≥6 lines of therapy perceived that time until serious side effects (P < .001) and time on therapy (P < .001) were more important compared with those who had received only 1 line of therapy. Positively phrased parameters were associated with increased perceived importance.Conclusions: Even among educated, heavily pretreated patients, many commonly used clinical research terms are poorly understood. Comprehension and the perceived importance of trial endpoints vary over the course of disease. These observations may inform the design, discussion, and reporting of clinical trials. [ABSTRACT FROM AUTHOR]- Published
- 2020
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30. Development and refinement of FoRtitude: An eHealth intervention to reduce fear of recurrence among breast cancer survivors.
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Wagner, Lynne I., Duffecy, Jenna, Begale, Mark, Victorson, David, Golden, Shannon L., Smith, Mary Lou, Penedo, Frank J., Mohr, David C., and Cella, David
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BREAST cancer ,CANCER patients ,FEAR ,TELEMEDICINE ,PSYCHOLOGICAL adaptation ,CANCER relapse ,COGNITIVE therapy - Abstract
The FoRtitude website consisted of didactic content and interactive tools designed to promote use of coping skills targeted to FoR, provided through text-based content, videos, audio-recordings, and graphic images. An interactive text messaging feature allowed BCS to request telephone-based text messages with reminders of how to use the three coping strategies to reduce FoR. BCS completed up to four telephone-based semistructured interviews to identify technical issues and obtain feedback to improve site content and usability (see Supplemental Appendix 3 for interview guide). [Extracted from the article]
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- 2020
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31. Dominant LMAN2L mutation causes intellectual disability with remitting epilepsy.
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Alkhater, Reem A., Wang, Peixiang, Ruggieri, Alessandra, Israelian, Lori, Walker, Susan, Scherer, Stephen W., Smith, Mary Lou, and Minassian, Berge A.
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INTELLECTUAL disabilities ,EPILEPSY ,RECESSIVE genes ,MISSENSE mutation ,ENDOPLASMIC reticulum ,CELL membranes ,ONTOGENY - Abstract
Mis‐secreted glycoproteins (LGI1, reelin) are emerging causes of epilepsy. LMAN2L belongs to a glycoprotein secretion chaperone family. One recessive LMAN2L missense mutation predicted to impair the chaperone's interaction with glycoproteins was reported in a family with intellectual disability (ID) and remitting epilepsy. We describe four members of a family with autosomal dominant inheritance of a similar phenotype. We show that they segregate a NM_001142292.1:c.1073delT mutation that eliminates LMAN2L's endoplasmic reticulum retention signal and mislocalizes the protein from that compartment to the plasma membrane. LMAN2L mislocalization, like impaired glycoprotein interaction, disturbs brain development, including generation of developmentally restricted epilepsy. [ABSTRACT FROM AUTHOR]
- Published
- 2019
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32. The Teratology Society adopts resolution on folic acid fortification.
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Smith, Mary Alice and Oakley, Godfrey
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- 2020
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33. Systematic review of the screening, diagnosis, and management of ADHD in children with epilepsy. Consensus paper of the Task Force on Comorbidities of the ILAE Pediatric Commission.
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Auvin, Stéphane, Kanemura, Hideaki, Aihara, Masao, Guerreiro, Marilisa M., Samia, Pauline, Vinayan, Kollencheri Puthenveettil, Smith, Mary Lou, Carmant, Lionel, Kerr, Michael, Hermann, Bruce, Dunn, David, Wirrell, Elaine, Wilmshurst, Jo M., Donald, Kirsten A., Berl, Madison, Hartmann, Hans, Valente, Kette D., Van Bogaert, Patrick, Cross, J. Helen, and Osawa, Makiko
- Subjects
ATTENTION-deficit hyperactivity disorder ,CHILDHOOD epilepsy ,ANTICONVULSANTS ,VALPROIC acid ,METHYLPHENIDATE - Abstract
Summary: Attention‐deficit/hyperactivity disorder (ADHD) is a common and challenging comorbidity affecting many children with epilepsy. A working group under the International League Against Epilepsy (ILAE) Pediatric Commission identified key questions on the identification and management of ADHD in children with epilepsy. Systematic reviews of the evidence to support approaches to these questions were collated and graded using criteria from the American Academy of Neurology Practice Parameter. Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) requirements were followed, with PROSPERO registration (CRD42018094617). No increased risk of ADHD in boys with epilepsy compared to girls with epilepsy was found (Level A). Valproate use in pregnancy is associated with inattentiveness and hyperactivity in offspring (1 class I study), and children with intellectual and developmental disabilities are at increased risk of ADHD (Level A). Impact of early seizure onset on development of ADHD was unclear (Level U), but more evident with poor seizure control (Level B). ADHD screening should be performed from 6 years of age, or at diagnosis, and repeated annually (Level U) and reevaluated after change of antiepileptic drug (AED) (Level U). Diagnosis should involve health practitioners with expert training in ADHD (Level U). Use of the Strength and Difficulties Questionnaire screening tool is supported (Level B). Formal cognitive testing is strongly recommended in children with epilepsy who are struggling at school (Level U). Behavioral problems are more likely with polytherapy than monotherapy (Level C). Valproate can exacerbate attentional issues in children with childhood absence epilepsy (Level A). Methylphenidate is tolerated and effective in children with epilepsy (Level B). Limited evidence supports that atomoxetine is tolerated (Level C). Multidisciplinary involvement in transition and adult ADHD clinics is essential (Level U). In conclusion, although recommendations could be proposed for some of the study questions, this systematic review highlighted the need for more comprehensive and targeted large‐population prospective studies. [ABSTRACT FROM AUTHOR]
- Published
- 2018
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34. Single‐item measure for assessing quality of life in children with drug‐resistant epilepsy.
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Conway, Lauryn, Widjaja, Elysa, and Smith, Mary Lou
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CHILDHOOD epilepsy ,STATISTICAL reliability ,QUALITY of life ,EPILEPSY surgery ,PEDIATRIC surgery ,MULTITRAIT multimethod techniques ,INTRACLASS correlation - Abstract
Summary: Objective: The current study investigated the psychometric properties of a single‐item quality of life (QOL) measure, the Global Quality of Life in Childhood Epilepsy question (G‐QOLCE), in children with drug‐resistant epilepsy. Method: Data came from the Impact of Pediatric Epilepsy Surgery on Health‐Related Quality of Life Study (PESQOL), a multicenter prospective cohort study (n = 118) with observations collected at baseline and at 6 months of follow‐up on children aged 4–18 years. QOL was measured with the QOLCE‐76 and KIDSCREEN‐27. The G‐QOLCE was an overall QOL question derived from the QOLCE‐76. Construct validity and reliability were assessed with Spearman's correlation and intraclass correlation coefficient (ICC). Responsiveness was examined through distribution‐based and anchor‐based methods. Results: The G‐QOLCE showed moderate (r ≥ 0.30) to strong (r ≥ 0.50) correlations with composite scores, and most subscales of the QOLCE‐76 and KIDSCREEN‐27 at baseline and 6‐month follow‐up. The G‐QOLCE had moderate test‐retest reliability (ICC range: 0.49–0.72) and was able to detect clinically important change in patients' QOL (standardized response mean: 0.38; probability of change: 0.65; Guyatt's responsiveness statistics: 0.62 and 0.78). Caregiver anxiety and family functioning contributed most strongly to G‐QOLCE scores over time. Significance: Results offer promising preliminary evidence regarding the validity, reliability, and responsiveness of the proposed single‐item QOL measure. The G‐QOLCE is a potentially useful tool that can be feasibly administered in a busy clinical setting to evaluate clinical status and impact of treatment outcomes in pediatric epilepsy. [ABSTRACT FROM AUTHOR]
- Published
- 2018
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35. Neural correlates of 'Theory of Mind' in very preterm born children.
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Mossad, Sarah I., Smith, Mary Lou, Pang, Elizabeth W., and Taylor, Margot J.
- Abstract
Very preterm (VPT) birth (<32 weeks' gestational age) has been implicated in social-cognitive deficits including Theory of Mind (ToM); the ability to attribute mental states to others and understand that those beliefs can differ from one's own or reality. The neural bases for ToM deficits in VPT born children have not been examined. We used magnetoencephalography (MEG) for its excellent spatial and temporal resolution to determine the neural underpinnings of ToM in 24 VPT and 24 full-term born (FT) children (7-13 years). VPT children performed more poorly on neuropsychological measures of ToM but not inhibition. In the MEG task, both FT children and VPT children recruited regions involved in false belief processing such as the rIFG (VPT: 275-350 ms, FT: 250-375 ms) and left inferior temporal gyrus (VPT: 375-450 ms, FT: 325-375 ms) and right fusiform gyrus (VPT: 150-200 ms, FT: 175-250 ms). The rIPL (included in the temporal-parietal junction) was recruited in FT children (475-575 ms) and the lTPJ in VPT children (500-575 ms). However, activations in all regions were reduced in the VPT compared to the FT group. We suggest that with increasing social-cognitive demands such as varying the type of scenarios in the standardized measure of ToM, reduced activations in the rIFG and TPJ in the VPT group may reflect the decreased performance. With access to both spatial and temporal information, we discuss the role of domain general and specific regions of the ToM network in both groups. Hum Brain Mapp 38:5577-5589, 2017. © 2017 Wiley Periodicals, Inc. [ABSTRACT FROM AUTHOR]
- Published
- 2017
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36. Executive function in paediatric medulloblastoma: The role of cerebrocerebellar connections.
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Law, Nicole, Smith, Mary Lou, Greenberg, Mark, Bouffet, Eric, Taylor, Michael D., Laughlin, Suzanne, Malkin, David, Liu, Fang, Moxon‐Emre, Iska, Scantlebury, Nadia, and Mabbott, Donald
- Subjects
- *
MEDULLOBLASTOMA , *EXECUTIVE function , *JUVENILE diseases , *CEREBROCEREBELLAR system , *COGNITION , *SHORT-term memory , *THERAPEUTICS , *PSYCHOLOGY - Abstract
Executive functions ( EFs) are involved in the attainment, maintenance, and integration of information; these functions may play a key role in cognitive and behavioural outcomes in children treated for medulloblastoma ( MB). At present, it remains unclear which EFs are most sensitive to the treatment effects for MB and whether damage to cerebrocerebellar circuitry is associated with EF. We completed a comprehensive evaluation of EF in 24 children treated for MB and 20 age-matched healthy children ( HC) and distilled these measures into components. Six components (C1-C6) were extracted from our model, reflecting dissociable constructs of EF: C1 = cognitive efficiency; C2 = planning/problem-solving; C3 = positive cognitive emotion regulation; C4 = working memory; C5 = negative cognitive emotion regulation; and C6 = mixed cognitive emotion regulation. Group differences were found for C1, C2, C3, and C4; the MB group showed poorer performance on EF tasks and made less use of positive cognitive emotion regulation strategies relative to HC. Compromise to cerebrocerebellar microstructure - cerebro-ponto-cerebellar and cerebello-thalamo-cerebral pathways - was evident in children treated for MB compared to HC. We found that cerebrocerebellar circuitry has a mediating effect on one component of EF following treatment for MB - working memory. [ABSTRACT FROM AUTHOR]
- Published
- 2017
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37. Development of intelligence 4 to 11 years after paediatric epilepsy surgery.
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Puka, Klajdi, Tavares, Tamara P., and Smith, Mary Lou
- Subjects
CHILDHOOD epilepsy ,EPILEPSY surgery ,HEALTH outcome assessment ,WECHSLER Adult Intelligence Scale ,SHORT-term memory ,NEUROPSYCHOLOGY ,REGRESSION analysis ,THERAPEUTICS - Abstract
Objective Little is known about the long-term intellectual outcomes following paediatric epilepsy surgery. Change is not likely within the first 2 years following surgery, and the few studies of longer term outcomes have yielded inconsistent results. This study addressed this issue by examining a large group of surgical and non-surgical patients at baseline and after 4-11 years. Methods Participants were 97 patients (mean age 20.08 [ SD: 4.44] years) with childhood-onset intractable epilepsy; 61 had undergone resective epilepsy surgery. Participants underwent neuropsychological testing with the age-appropriate Wechsler Intelligence Scale, generating Full Scale, Performance and Verbal IQs, and Working Memory and Processing Speed indices. Results In total 54% of the surgical and 39% of the non-surgical patients were seizure free in the preceding 12 months ( p > .05); however, surgical patients did achieve seizure freedom sooner and used fewer medications at follow-up. Surgical status was not associated with any cognitive domain. However, with the exception of processing speed, significant seizure status × time interaction effects were evident and seizure-free patients had higher scores at follow-up. Regression analyses additionally showed that low pre-operative scores were predictive of improvement overtime, whereas high pre-operative scores were predictive of high scores at follow-up. Interpretation The results show similar intellectual outcomes for surgical and non-surgical paediatric patients. Four to 11 years after paediatric epilepsy surgery, seizure freedom, whether attained through epilepsy surgery or other means, was found to be associated with intellectual improvements. Seizure status and baseline scores were the most consistent predictors. [ABSTRACT FROM AUTHOR]
- Published
- 2017
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38. Decreasing cerebral oxygen consumption during upright tilt in vasovagal syncope.
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Medow, Marvin S., Kothari, Mira L., Goetz, Amanda M., O'Donnell‐Smith, Mary Breige, Terilli, Courtney, and Stewart, Julian M.
- Subjects
TRANSCRANIAL Doppler ultrasonography ,INFRARED spectroscopy ,ORTHOSTATIC intolerance ,AUTONOMIC nervous system ,DYSAUTONOMIA ,TACHYCARDIA - Abstract
We measured changes in transcranial Doppler ultrasound ( TCD) and near infrared spectroscopy ( NIRS) during 70° upright tilt in patients with recurrent vasovagal syncope ( VVS, N = 20), postural tachycardia syndrome ( POTS, N = 20), and healthy controls ( N = 12) aged 15-27 years old. VVS was included if they fainted during testing within 5-15 min of upright tilt. We combined TCD and NIRS to obtain estimates of percent change in the cerebral metabolic rate of oxygen consumption ( CMRO
2 ), cerebral blood flow velocity ( CBFv), and oxygen extraction fraction ( OEF). Over the course of 10 min of upright tilt, CBFv decreased from a baseline of 70 ± 5 to 63 ± 5 cm/sec in controls and 74 ± 3 to 64 ± 3 cm/sec in POTS while decreasing from 74 ± 4 to 44 ± 3 cm/sec in VVS. CMRO2 was unchanged in POTS and controls during tilt while OEF increased by 19 ± 3% and 15 ± 3%, respectively. CMRO2 decreased by 31 ± 3% in VVS during tilt while OEF only increased by 7 ± 3%. Oxyhemoglobin decreased by 1.1 ± 1.3 μmol/kg brain tissue in controls, by 1.1 ± 1.3 μmol/kg in POTS, and 11.1 ± 1.3 μmol/kg in VVS. CBFv and CMRO2 fell steadily in VVS during upright tilt. The deficit in CMRO2 in VVS results from inadequate OEF in the face of greatly reduced CBF. [ABSTRACT FROM AUTHOR]- Published
- 2017
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39. Validating the shortened Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55) in a sample of children with drug-resistant epilepsy.
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Conway, Lauryn, Widjaja, Elysa, Smith, Mary Lou, Speechley, Kathy N., and Ferro, Mark A.
- Subjects
CHILDREN & drugs ,DRUG abuse ,CHILDREN ,SEIZURES (Medicine) ,MULTIVARIATE analysis - Abstract
Objective The aim of this study was to validate the newly developed shortened Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55) in a sample of children with drug-resistant epilepsy. Methods Data came from 136 children enrolled in the Impact of Pediatric Epilepsy Surgery on Health-Related Quality of Life Study (PEPSQOL), a multicenter prospective cohort study. Confirmatory factor analysis was used to assess the higher-order factor structure of the QOLCE-55. Convergent and divergent validity was assessed by correlating subscales of the KIDSCREEN-27 with the QOLCE-55. Measurement equivalence of the QOLCE-55 was evaluated using multiple-group confirmatory factor analysis of children with drug-resistant epilepsy from PEPSQOL versus children with new-onset epilepsy from HERQULES (Health-Related Quality of Life in Children with Epilepsy Study). Results The higher-order factor structure of the QOLCE-55 demonstrated adequate fit: Comparative Fit Index (CFI) = 0.948; Tucker-Lewis Index (TLI) = 0.946; Root Mean Square of Approximation (RMSEA) = 0.060 (90% confidence interval [CI] 0.054-0.065); Weighted Root Mean Square Residuals (WRMR) = 1.247. Higher-order factor loadings were strong, ranging from λ = 0.74 to 0.81. Internal consistency reliability was excellent (α = 0.97, subscales α > 0.82). QOLCE-55 subscales demonstrated moderate to strong correlations with similar subscales of the KIDSCREEN-27 (ρ = 0.43-0.75) and weak to moderate correlations with dissimilar subscales (ρ = 0.25-0.42). The QOLCE-55 demonstrated partial measurement equivalence at the level of strict invariance - χ
2 (2,823) = 3,727.9, CFI = 0.961, TLI = 0.962, RMSEA = 0.049 (0.044, 0.053), WRMR = 1.834. Significance The findings provide support for the factor structure of the QOLCE-55 and contribute to its robust psychometric profile as a reliable and valid measure. Researchers and health practitioners should consider the QOLCE-55 as a viable option for reducing respondent burden when assessing health-related quality of life in children with epilepsy. [ABSTRACT FROM AUTHOR]- Published
- 2017
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40. Pregnancy-related Listeriosis.
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Desai, Rahat Wadhwa and Smith, Mary Alice
- Abstract
About one in seven cases of listeriosis occurs in pregnant women, and, although listeriosis is rare, it is the third leading cause of death from foodborne infections. Pregnancy-related listeriosis increases the risk for fetal and neonatal mortality by approximately 21%. During pregnancy, infections are more likely to occur in the third trimester (66%) than the first trimester (3%). However, fetal and neonatal adverse effects are less common as gestational age increases or with older gestational age at birth. Pregnant women seem highly susceptible in some listeriosis outbreaks making up a large percentage of cases, whereas others contain very few. Whether this results from differences in strains of L. monocytogenes, exposures, or other factors remains to be determined. Food and Agriculture Organization of United Nations/World Health Organization (FAO/WHO) estimates the human lethal dose for 50% (LD
50 ) for fetal/neonatal loss is 1.9 x 106 colony forming units (CFUs) L. monocytogenes. Animal models have been developed for pregnancy-related listeriosis showing similar susceptibility and clinical outcomes as in humans. Nonhuman primate and guinea pig animal models have similar (LD50 ) values to the estimated human LD50 . Additional animal studies are needed to understand the pathways leading to fetal and neonatal listeriosis in humans. More information is needed to understand dose response, to model risk for listeriosis at lower concentrations, and to determine why some pregnant women may be more susceptible than others. To better treat listeriosis during pregnancy, biomarkers for early diagnosis of listeriosis are also needed. Last, pregnant women need to be educated about avoiding high-risk foods, like Mexican-style cheese and ready-to-eat meats. [ABSTRACT FROM AUTHOR]- Published
- 2017
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41. Verbal memory after temporal lobe epilepsy surgery in children: Do only mesial structures matter?
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Law, Nicole, Benifla, Mony, Rutka, James, and Smith, Mary Lou
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VERBAL memory ,TEMPORAL lobectomy ,TEMPORAL lobe epilepsy ,SURGICAL excision ,NEUROPSYCHOLOGY ,THERAPEUTICS - Abstract
Objective Previous findings have been mixed regarding verbal memory outcome after left temporal lobectomy in children, and there are few studies comparing verbal memory change after lateral versus mesial temporal lobe resections. We compared verbal memory outcome associated with sparing or including the mesial structures in children who underwent left or right temporal lobe resection. We also investigated predictors of postsurgical verbal memory change. Methods We retrospectively assessed verbal memory change approximately 1 year after unilateral temporal lobe epilepsy surgery using a list learning task. Participants included 23 children who underwent temporal lobe surgery with sparing of the mesial structures (13 left), and 40 children who had a temporal lobectomy that included resection of mesial structures (22 left). Results Children who underwent resection from the left lateral and mesial temporal lobe were the only group to show decline in verbal memory. Furthermore, when we considered language representation in the left temporal resection group, patients with left language representation and spared mesial structures showed essentially no change in verbal memory from preoperative to follow-up, whereas those with left language representation and excised mesial structures showed a decline. Postoperative seizure status had no effect on verbal memory change in children after left temporal lobe surgery. Finally, we found that patients with intact preoperative verbal memory experienced a significant decline compared to those with below average preoperative verbal memory. Significance Our findings provide evidence of significant risk factors for verbal memory decline in children, specific to left mesial temporal lobe epilepsy. Children who undergo left temporal lobe surgery that includes mesial structures may be most vulnerable for verbal memory decline, especially when language representation is localized to the left hemisphere and when preoperative verbal memory is intact. [ABSTRACT FROM AUTHOR]
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- 2017
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42. Catalytic Addition of Fluorinated Benzoic Acids to Butadiene.
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Maji, Tapan, Maliszewski, Mary L., Smith, Mary K., and Tunge, Jon A.
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CATALYTIC activity ,BENZOIC acid ,BUTADIENE ,RHODIUM catalysts ,ISOMERS - Abstract
The rhodium-catalyzed addition of polyfluorobenzoic acids to butadiene led to a range of branched and linear allylic esters, with preference for the formation of the branched isomer. This method provided branched fluorinated esters in an atom-economical catalytic addition reaction. The observation that the yield of the addition product depended on the acidity of the starting acid led to the hypothesis that the addition reaction was reversible and thus thermodynamically controlled. Deuterium-labeling and crossover experiments supported this hypothesis. Ultimately, the dependence of yield on the p K
a as reported in this paper may help to guide approaches to high-yielding additions of acids to dienes. [ABSTRACT FROM AUTHOR]- Published
- 2016
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43. Remembrance and time passed: Memory outcomes 4-11 years after pediatric epilepsy surgery.
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Puka, Klajdi and Smith, Mary Lou
- Subjects
- *
EPILEPSY surgery , *TEMPORAL lobe epilepsy , *CHILDHOOD epilepsy , *COGNITIVE ability , *SEIZURES in children , *LONG-term health care , *ANTICONVULSANTS , *THERAPEUTICS - Abstract
Objective Little is known about the long-term cognitive outcomes following pediatric epilepsy surgery. Although the evidence for change within the first 2 years is not compelling, the plasticity of the immature brain may allow for improvements in the long term. This study examined memory function in a cohort of surgical and nonsurgical patients at baseline and 4-11 years after. Method Participants were 88 patients (mean age 20.05, standard deviation [ SD] 4.21 years) with childhood-onset intractable epilepsy; 53 had undergone resective epilepsy surgery. Verbal and visual memory were assessed at baseline and follow-up using standardized tests of recall of stories, faces, word pairs, and word lists. Results Improvements over time were not found; outcomes were largely independent of surgical status. Those who were seizure-free at follow-up had better story recall at both times (p = 0.028), and did not show improvement. Among patients with extratemporal lobe epilepsy, significant declines in word list recall were found over time irrespective of surgical or seizure status (p = 0.010). Effects of laterality of seizure focus were evident only when examining patients with temporal lobe epilepsy ( TLE); patients with left TLE had lower story recall scores compared to patients with right TLE at long-term follow-up (p = 0.043). Significance Patients who became seizure-free had some advantages in memory, but did not show improvements over time. These findings have important implications for understanding potential outcomes from surgery or continued use of antiepileptic medications. [ABSTRACT FROM AUTHOR]
- Published
- 2016
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44. Indications and expectations for neuropsychological assessment in epilepsy surgery in children and adults: Executive summary of the report of the ILAE Neuropsychology Task Force Diagnostic Methods Commission: 2017‐2021.
- Author
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Baxendale, Sallie, Wilson, Sarah J., Baker, Gus A., Barr, William, Helmstaedter, Christoph, Hermann, Bruce P., Langfitt, John, Reuner, Gitta, Rzezak, Patricia, Samson, Séverine, and Smith, Mary‐Lou
- Subjects
NEUROPSYCHOLOGICAL tests ,EPILEPSY surgery ,CHILDHOOD epilepsy ,PEDIATRIC surgery ,TASK forces ,TEMPORAL lobectomy - Abstract
The role of the neuropsychological assessment in the presurgical evaluation of epilepsy surgery candidates has evolved over time, and this is now a mandatory part of the preoperative evaluation of epilepsy surgery patients. Neuropsychological changes following surgery are dynamic, and careful consideration should be given to the potential impact of the interval since surgery on the results of any postoperative neuropsychological assessment. The checklist below summarizes the recommendations of the task force for best practice in the neuropsychological assessment of patients prior to and following epilepsy surgery today (Appendix). [Extracted from the article]
- Published
- 2019
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45. Correlates of health-related quality of life in children with drug resistant epilepsy.
- Author
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Conway, Lauryn, Smith, Mary Lou, Ferro, Mark A., Speechley, Kathy N., Connoly, Mary B., Snead, O. Carter, Widjaja, Elysa, Go, Cristina, Ramachandrannair, Rajesh, Carmant, Lionel, Buchhalter, Jeffrey, Brna, Paula, Booth, Fran, Almubarak, Salah, and Levin, Simon
- Subjects
- *
QUALITY of life , *CHILDHOOD epilepsy , *DRUG resistance , *PEDIATRICS , *REGRESSION analysis , *CAREGIVERS , *CAREGIVER education , *EMPLOYMENT , *DIAGNOSIS - Abstract
Objective Health-related quality of life ( HRQL) is compromised in children with epilepsy. The current study aimed to identify correlates of HRQL in children with drug resistant epilepsy. Methods Data came from 115 children enrolled in the Impact of Pediatric Epilepsy Surgery on Health-Related Quality of Life Study ( PEPSQOL), a multicenter prospective cohort study. Individual, clinical, and family factors were evaluated. HRQL was measured using the Quality of Life in Childhood Epilepsy Questionnaire ( QOLCE), a parent-rated epilepsy-specific instrument, with composite scores ranging from 0 to 100. A series of univariable linear regression analyses were conducted to identify significant associations with HRQL, followed by a multivariable regression analysis. Results Children had a mean age of 11.85 ± 3.81 years and 65 (56.5%) were male. The mean composite QOLCE score was 60.18 ± 16.69. Child age, sex, age at seizure onset, duration of epilepsy, caregiver age, caregiver education, and income were not significantly associated with HRQL. Univariable regression analyses revealed that a higher number of anti-seizure medications (p = 0.020), lower IQ (p = 0.002), greater seizure frequency (p = 0.048), caregiver unemployment (p = 0.010), higher caregiver depressive and anxiety symptoms (p < 0.001 for both), poorer family adaptation, fewer family resources, and a greater number of family demands (p < 0.001 for all) were associated with lower HRQL. Multivariable regression analysis showed that lower child IQ (β = 0.20, p = 0.004), fewer family resources (β = 0.43, p = 0.012), and caregiver unemployment (β = 6.53, p = 0.018) were associated with diminished HRQL in children. Significance The results emphasize the importance of child cognition and family variables in the HRQL of children with drug-resistant epilepsy. The findings speak to the importance of offering comprehensive care to children and their families to address the nonmedical features that impact on HRQL. [ABSTRACT FROM AUTHOR]
- Published
- 2016
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46. Where are they now? Psychosocial, educational, and vocational outcomes after epilepsy surgery in childhood.
- Author
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Puka, Klajdi and Smith, Mary Lou
- Subjects
- *
EPILEPSY surgery , *SPASMS , *CHILDREN with epilepsy , *CHILDHOOD epilepsy , *PSYCHOSOCIAL factors , *THERAPEUTICS - Abstract
Objective To evaluate the social, educational, and vocational outcomes of young adults who underwent resective epilepsy surgery in childhood (4-11 years earlier), and in a comparison group of nonsurgical patients with intractable epilepsy. Methods Participants were 78 patients (mean age 22.37, standard deviation [ SD] 2.47 years) with childhood onset intractable epilepsy, of whom 51 underwent surgery. At follow-up, participants were at least 18 years of age. Patients' current education, employment, income, and various social factors, including living arrangements, relationship status, and involvement with friends and community organizations were recorded. In addition, parents of patients completed the Adult Behaviour Checklist ( ABCL). Employment status, education, and income were compared with provincial census data. Results There was no statistically significant difference in the proportion of surgical and nonsurgical patients who were seizure-free in the 12 months preceding the study: 53% and 33%, respectively (p = 0.10). Among all patients, 60% were enrolled in, or had completed, postsecondary education and 82% were employed or a student; similar to the general population. However, compared with population data, fewer patients with epilepsy (20%) had an annual income of $10,000 or greater (p < 0.001). Compared to normative data, a greater proportion of patients scored in the abnormal range in some ABCL scales (p < 0.028). Patients with IQs > 85 had significantly better educational, vocational, and psychosocial outcomes compared to patients with IQs ≤ 85. Surgical and nonsurgical patients did not differ on any outcome variable. Compared to patients with seizures, more seizure-free patients were living independently (p = 0.03), and had a driver's licence (p < 0.001). Other outcomes were similar among patients with and without seizures. Significance Overall, patients with intractable epilepsy in childhood attained educational and vocational outcomes similar to that of the general population, but earned a significantly lower income. Seizure freedom, attained through surgery or medication management, was associated with better outcomes in limited psychosocial measures. [ABSTRACT FROM AUTHOR]
- Published
- 2016
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47. The influence of socioeconomic status on health resource utilization in pediatric epilepsy in a universal health insurance system.
- Author
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Puka, Klajdi, Smith, Mary Lou, Moineddin, Rahim, Snead, O. Carter, and Widjaja, Elysa
- Subjects
- *
NEUROLOGICAL disorders , *TREATMENT of epilepsy , *ELECTROENCEPHALOGRAPHY , *BRAIN diseases , *DEVELOPMENTAL disabilities , *EPILEPSY - Abstract
Objectives It is unknown if there is a disparity in health resource utilization ( HRU) among children with epilepsy in a universal health insurance system. The aims of this study were to evaluate whether socioeconomic status ( SES) influenced the pattern of HRU among children with epilepsy, and to determine if neurology visits were associated with emergency department ( ED) visits and hospitalizations. Methods Health administrative databases were used to identify HRU among children with epilepsy in Ontario, Canada. The frequency of neurology visits, ED visits, and hospitalizations were assessed for 1 year. SES was measured using dissemination area income and deprivation index. The association between SES and HRU was evaluated, adjusting for age, sex, residence, and comorbidities. Subsequently, we assessed whether neurology visits influenced ED visits and hospitalizations, adjusting for age, sex, residence, comorbidities, and SES. Results Deprivation index was a more sensitive measure of disparity in HRU than dissemination area income. Status epilepticus-related ED visits and hospitalizations were most expensive but accounted for a small proportion of total costs. Higher deprivation was associated with fewer neurology visits (relative risk [ RR] 0.85-0.89), more frequent ED visits ( RR 1.08-1.36), and hospitalizations ( RR 1.27). Increased neurology visits were associated with more frequent ED visits ( RR 1.10) and hospitalizations ( RR 1.15). The associations between neurology visits and ED visits as well as hospitalizations varied by deprivation index, in that neurology visits were associated with increased ED visits and hospitalizations and the increase was higher in the most deprived relative to the least deprived (all p < 0.0001). Significance We found disparity in HRU by SES despite the universal health insurance system. More frequent neurology visits were associated with more frequent ED visits and hospitalizations after adjusting for SES, probably related to epilepsy severity. Our study identified an at-risk population for high resource use that may require additional support to reduce ED visits and hospitalizations. [ABSTRACT FROM AUTHOR]
- Published
- 2016
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48. Effects of hydroxyurea treatment for patients with hemoglobin SC disease.
- Author
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Luchtman-Jones, Lori, Pressel, Sara, Hilliard, Lee, Brown, R. Clark, Smith, Mary G., Thompson, Alexis A., Lee, Margaret T., Rothman, Jennifer, Rogers, Zora R., Owen, William, Imran, Hamayun, Thornburg, Courtney, Kwiatkowski, Janet L., Aygun, Banu, Nelson, Stephen, Roberts, Carla, Gauger, Cynthia, Piccone, Connie, Kalfa, Theodosia, and Alvarez, Ofelia
- Published
- 2016
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49. Working after a metastatic cancer diagnosis: Factors affecting employment in the metastatic setting from ECOG-ACRIN's Symptom Outcomes and Practice Patterns study.
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Tevaarwerk, Amye J., Lee, Ju‐Whei, Terhaar, Abigail, Sesto, Mary E., Smith, Mary Lou, Cleeland, Charles S., Fisch, Michael J., and Lee, Ju-Whei
- Subjects
METASTASIS ,SYMPTOMS ,LOGISTIC regression analysis ,PERFORMANCE evaluation ,MULTIVARIATE analysis ,DIAGNOSIS ,TUMOR diagnosis ,TUMOR treatment ,BREAST tumors ,COLON tumors ,COMPARATIVE studies ,EMPLOYMENT ,LONGITUDINAL method ,LUNG tumors ,RESEARCH methodology ,MEDICAL cooperation ,PROSTATE tumors ,RECTUM tumors ,RESEARCH ,SELF-evaluation ,TIME ,TUMORS ,WORK ,EVALUATION research ,TREATMENT effectiveness ,DISEASE prevalence ,SEVERITY of illness index ,DISEASE progression ,DISEASE complications - Abstract
Background: Improved survival for individuals with metastatic cancer accentuates the importance of employment for cancer survivors. A better understanding of how metastatic cancer affects employment is a necessary step toward the development of tools for assisting survivors in this important realm.Methods: The ECOG-ACRIN Symptom Outcomes and Practice Patterns study was analyzed to investigate what factors were associated with the employment of 680 metastatic cancer patients. Univariate and multivariate logistic regression analyses were conducted to compare patients stably working with patients no longer working.Results: There were 668 metastatic working-age participants in the analysis: 236 (35%) worked full- or part-time, whereas 302 (45%) had stopped working because of illness. Overall, 58% reported some change in employment due to illness. A better performance status and non-Hispanic white ethnicity/race were significantly associated with continuing to work despite a metastatic cancer diagnosis in the multivariate analysis. The disease type, time since metastatic diagnosis, number of metastatic sites, location of metastatic disease, and treatment status had no significant impact. Among the potentially modifiable factors, receiving hormonal treatment (if a viable option) and decreasing symptom interference were associated with continuing to work.Conclusions: A significant percentage of the metastatic patients remained employed; increased symptom burden was associated with a change to no longer working. Modifiable factors resulting in work interference should be minimized so that patients with metastatic disease may continue working if this is desired. Improvements in symptom control and strategies developed to help address workplace difficulties have promise for improving this aspect of survivorship. [ABSTRACT FROM AUTHOR]- Published
- 2016
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50. Change in presurgical diagnostic imaging evaluation affects subsequent pediatric epilepsy surgery outcome.
- Author
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Rubinger, Luc, Chan, Carol, D'Arco, Felice, Moineddin, Rahim, Muthaffar, Osama, Rutka, James T., Snead, O. Carter, Smith, Mary Lou, and Widjaja, Elysa
- Subjects
CHILDHOOD epilepsy ,DIAGNOSTIC imaging ,EPILEPSY surgery ,MAGNETIC resonance imaging of the brain ,MAGNETOENCEPHALOGRAPHY ,THERAPEUTICS - Abstract
Objective Since 2008, we have changed our presurgical diagnostic imaging evaluation for medically refractory focal epilepsy to include high-resolution epilepsy protocol on 3 T magnetic resonance imaging ( MRI), and combined magnetoencephalography and 18-fluorodeoxyglucose-positron emission tomography ( FDG- PET) in selected patients with normal or subtle changes on MRI or discordant diagnostic tests. The aim of this study was to evaluate the effectiveness of the change in imaging practice on epilepsy surgery outcome in a tertiary pediatric epilepsy surgery center. Methods The change in practice occurred in early 2008, and patients were classified based on old or new practice. The patient characteristics, surgical variables, and seizure-free surgical outcome were compared, and the trend in seizure-free outcome over time was assessed. Results There was a trend for increased abnormal MRI (92% vs. 86%, respectively, p = 0.062), and increased utilization of FDG- PET (34% vs. 3% respectively, p < 0.001) with new relative to old practice. There were no statistically significant differences in invasive monitoring, location, and type of surgery and histology between the two periods (all p > 0.05). During the old practice, there was no statistically significant change in yearly trend of seizure-free outcome (odds ratio [ OR] 0.960, 95% confidence interval [ CI] 0.875-1.053, p = 0.386). The change in practice in 2008 was associated with a significant improvement in seizure-free outcome ( OR 1.535, 95% CI 1.100-2.142, p = 0.012). During the new practice, there was a significant positive trend in yearly seizure-free outcome ( OR 1.219, 95% CI 1.053-1.411, p = 0.008), after adjusting for age at seizure onset, invasive monitoring, location and type of surgery, histology, MRI, magnetoencephalography, and FDG- PET. Significance We have found an improvement in seizure-free surgical outcome following the change in imaging practice. This study highlights the importance of optimizing and improving presurgical diagnostic imaging evaluation to improve surgical outcome. [ABSTRACT FROM AUTHOR]
- Published
- 2016
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- View/download PDF
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