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TicHelper.com ("TicHelper") is an interactive online treatment program for youth with chronic tic disorders (CTDs) or Tourette Syndrome (TS) and their parents. It is based on Comprehensive Behavioral Intervention for Tics (CBIT), an individual, outpatient therapy protocol shown to effectively reduce tics in randomized controlled trials. The TicHelper website offers a user-friendly dashboard that is effective in making it easy to navigate through different treatment modules. Modules parallel core CBIT procedures and consist of interactive exercises, informational videos, and self-report ratings. TicHelper has some weaknesses (e.g., no outcomes research specific to the program has been published to date); however, its strengths (easily navigable, clear instructions, appropriate content) outweigh its weaknesses, making it a potentially useful dissemination tool to make CBIT more accessible to families and youth with tics.
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OBJECTIVES: Tourette Syndrome (TS) is a chronic neuropsychiatric condition that frequently persists into adulthood. Existing research has identified demographic and symptom-level variables associated with psychopathology and poor quality of life in TS. However, behavior patterns associated with enhanced or adaptive psychological and global functioning among adults with TS have yet to be empirically identified. The current study examined whether tic-specific activity restriction is related to emotional functioning and quality of life in adults with TS. METHODS: Participants were 509 adults from the Tourette Syndrome Impact Survey who completed self-report measures of demographics, tic severity, emotional functioning, quality of life, and tic-related general and social activity restriction. RESULTS: Partial correlations controlling for tic severity indicated that tic-related general and social activity restriction were significantly correlated with lower quality of life and poorer emotional functioning. Hierarchical linear regression models indicated that activity restriction significantly predicted lower quality of life and poorer emotional functioning when controlling for tic severity and demographic variables. CONCLUSIONS: Adults who restrict fewer activities due to tics, regardless of tic severity, experience greater quality of life and better emotional functioning. Clinically, adults with chronic tics may benefit from interventions focused on enhancing engagement in valued life activities.
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Emociones , Calidad de Vida/psicología , Tics/psicología , Síndrome de Tourette/psicología , Adolescente , Adulto , Ansiedad/complicaciones , Ansiedad/psicología , Depresión/complicaciones , Depresión/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Índice de Severidad de la Enfermedad , Conducta Social , Encuestas y Cuestionarios , Tics/complicaciones , Síndrome de Tourette/complicacionesRESUMEN
BACKGROUND: Sensory intolerance refers to high levels of distress evoked by everyday sounds (e.g., sounds of people chewing) or commonplace tactile sensations (e.g., sticky or greasy substances). Sensory intolerance may be associated with obsessive-compulsive (OC) symptoms, OC-related phenomena, and other forms of psychopathology. Sensory intolerance is not included as a syndrome in current diagnostic systems, although preliminary research suggests that it might be a distinct syndrome. OBJECTIVES: First, to investigate the latent structure of sensory intolerance in adults; that is, to investigate whether it is syndrome-like in nature, in which auditory and tactile sensory intolerance co-occur and are associated with impaired functioning. Second, to investigate the psychopathologic correlates of sensory intolerance. In particular, to investigate whether sensory intolerance is associated with OC-related phenomena, as suggested by previous research. METHOD: A sample of 534 community-based participants were recruited via Amazon.com's Mechanical Turk program. Participants completed measures of sensory intolerance, OC-related phenomena, and general psychopathology. RESULTS: Latent class analysis revealed two classes of individuals: those who were intolerant of both auditory and tactile stimuli (n=150), and those who were relatively undisturbed by auditory or tactile stimuli (n=384). Sensory-intolerant individuals, compared to those who were comparatively sensory tolerant, had greater scores on indices of general psychopathology, more severe OC symptoms, a higher likelihood of meeting caseness criteria for OC disorder, elevated scores on measures of OC-related dysfunctional beliefs, a greater tendency to report OC-related phenomena (e.g., a greater frequency of tics), and more impairment on indices of social and occupational functioning. Sensory-intolerant individuals had significantly higher scores on OC symptoms even after controlling for general psychopathology. CONCLUSIONS: Consistent with recent research, these findings provide further evidence for a sensory intolerance syndrome. The findings provide a rationale for conducting future research for determining whether a sensory intolerance syndrome should be included in the diagnostic nomenclature.
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Trastornos de la Sensación/diagnóstico , Trastornos de la Sensación/fisiopatología , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Trastorno Obsesivo Compulsivo/diagnóstico , Trastorno Obsesivo Compulsivo/fisiopatología , Adulto JovenRESUMEN
Tic severity is composed of several dimensions. Tic frequency and intensity are two such dimensions, but little empirical data exist regarding their relative contributions to functional impairment in those with chronic tic disorders (CTD). The present study examined the relative contributions of these dimensions in predicting tic-related impairment across several psychosocial domains. Using data collected from parents of youth with CTD, multivariate regression analyses revealed that both tic frequency and intensity predicted tic-related impairment in several areas; including family and peer relationships, school interference, and social endeavors, even when controlling for the presence of comorbid anxiety symptoms and Attention Deficit Hyperactivity Disorder diagnostic status. Results showed that tic intensity predicted more variance across more domains than tic frequency.
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Padres , Calidad de Vida/psicología , Trastornos de Tic/psicología , Tics/psicología , Adolescente , Niño , Femenino , Humanos , Masculino , Grupo Paritario , Percepción , Escalas de Valoración Psiquiátrica , Índice de Severidad de la Enfermedad , Encuestas y Cuestionarios , Evaluación de Síntomas , Trastornos de Tic/diagnóstico , Tics/diagnósticoRESUMEN
To establish a patient-centered agenda for research that will lead to effective, widespread availability, adoption, and utilization of evidence-based behavioral treatment of Tourette syndrome and other tic disorders (TDs), we planned and executed a multistage, collaborative "Treating Tourette Together" research planning project with researchers, clinicians, patients, families, and other interested parties. Priorities for future behavioral treatment research were solicited from these parties via anonymous community surveys, a 2-day research planning summit with 46 individuals representing key stakeholder groups, and community response to summit reports. Four high-priority research domains were identified: (a) expanding treatment access, (b) improving treatment outcomes, (c) optimizing treatment within a broader care model, and (d) evaluating outcomes beyond tic severity. Community-engaged participatory research models can efficiently delineate clear and actionable priorities for clinical research. This approach holds promise for improving the impact of clinical research in TDs and other neuropsychiatric disorders.
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Trastornos de Tic , Tics , Síndrome de Tourette , Humanos , Tics/terapia , Trastornos de Tic/psicología , Síndrome de Tourette/terapia , Síndrome de Tourette/psicología , Terapia Conductista , Atención Dirigida al PacienteRESUMEN
Acceptance-enhanced behavior therapy for trichotillomania (AEBT-TTM) is effective in reducing trichotillomania (TTM) symptoms, but the durability of treatment effects remains in question. This study analyzed 6-month follow-up data from a large randomized clinical trial comparing AEBT-TTM to an active psychoeducation and supportive therapy control (PST). Adults with TTM (N=85; 92% women) received 10 sessions of AEBT-TTM or PST across 12 weeks. Independent evaluators assessed participants at baseline, post-treatment, and 6 months follow-up. For both AEBT-TTM and PST, self-reported and evaluator-rated TTM symptom severity decreased from baseline to follow-up. TTM symptoms did not worsen from post-treatment to follow-up. At follow-up, AEBT-TTM and PST did not differ in rates of treatment response, TTM diagnosis, or symptom severity. High baseline TTM symptom severity was a stronger predictor of high follow-up severity for PST than for AEBT-TTM, suggesting AEBT-TTM may be a better option for more severe TTM. Results support the efficacy of AEBT-TTM and show that treatment gains were maintained over time. Although AEBT-TTM yielded lower symptoms at post-treatment, 6-month follow-up outcomes suggest AEBT-TTM and PST may lead to similar symptom levels in the longer term. Future research should examine mechanisms that contribute to long-term gain maintenance.
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Tricotilomanía , Adulto , Femenino , Humanos , Masculino , Terapia Conductista/métodos , Estudios de Seguimiento , Resultado del Tratamiento , Tricotilomanía/terapia , Tricotilomanía/diagnóstico , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
Chronic tic disorders (CTD) are characterized by motor and/or vocal tics. Existing data on the impact of tics in adulthood is limited by small, treatment-seeking samples or by data aggregated across adults and children. The current study explored the functional impact of tics in adults using a nationwide sample of 672 participants with a self-reported CTD. The impact of tics on physical, social, occupational/academic, and psychological functioning was assessed. Results suggested mild to moderate functional impairment and positive correlations between impairment and tic severity. Notable portions of the sample reported social or public avoidance and experiences of discrimination resulting from tics. Compared to previously reported population norms, participants had more psychological difficulties, greater disability, and lower quality of life. The current study suggests that CTDs can adversely impact functioning in adults and highlights the need for clinical interventions and systemic efforts to address tic-related impairments.
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Calidad de Vida , Perfil de Impacto de Enfermedad , Tics/psicología , Síndrome de Tourette/psicología , Actividades Cotidianas , Adolescente , Adulto , Anciano , Enfermedad Crónica , Femenino , Encuestas Epidemiológicas , Humanos , Internet , Masculino , Persona de Mediana Edad , Índice de Severidad de la Enfermedad , Factores Socioeconómicos , Encuestas y Cuestionarios , Adulto JovenRESUMEN
Response Inhibition (RI) is the ability to suppress behaviors that are inappropriate for a given context. Obsessive-compulsive disorder (OCD) has been associated with impaired RI in adults as measured by the Stop Signal Task (SST). Conflicting results have been found in terms of the relationship between OCD severity and SST performance, and no studies to date have examined the relationship between SST and response to OCD treatment. Also relatively unknown is whether RI performance in OCD is associated with developmental or gender differences. This naturalistic study examined the relationship between SST performance, OCD severity, and OCD treatment response in a pediatric sample undergoing intensive treatment involving exposure and response prevention and medication management (n = 36). The SST and Children's Yale-Brown Obsessive Compulsive Scale (CYBOCS) were administered at admission and program discharge. OCD severity was not significantly related to stop signal reaction time (SSRT) in the whole sample and among subgroups divided by age and gender. Baseline SSRT and SSRT change did not predict CYBOCS change across treatment in the whole sample, but exploratory analyses indicated both were significant predictors among female adolescents. Results suggest there may be developmental gender differences in the relationship between RI and clinical improvement in pediatric OCD.
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Background: Previous studies in people with substance use disorders (SUDs) have implicated both the frontopolar cortex and amygdala in drug cue reactivity and craving, and amygdala-frontopolar coupling is considered a marker of early relapse risk. Accumulating data highlight that the frontopolar cortex can be considered a promising therapeutic target for transcranial magnetic stimulation (TMS) in SUDs. However, one-size-fits-all approaches to TMS targets resulted in substantial variation in both physiological and behavioral outcomes. Individualized TMS approaches to target cortico-subcortical circuits like amygdala-frontopolar have not yet been investigated in SUDs. Objective: Here, we (1) defined individualized TMS target location based on functional connectivity of the amygdala-frontopolar circuit while people were exposed to drug-related cues, (2) optimized coil orientation based on maximizing electric field (EF) perpendicular to the individualized target, and (3) harmonized EF strength in targeted brain regions across a population. Method: MRI data including structural, resting-state, and task-based fMRI data were collected from 60 participants with methamphetamine use disorders (MUDs). Craving scores based on a visual analog scale were collected immediately before and after the MRI session. We analyzed inter-subject variability in the location of TMS targets based on the maximum task-based connectivity between the left medial amygdala (with the highest functional activity among subcortical areas during drug cue exposure) and frontopolar cortex using psychophysiological interaction (PPI) analysis. Computational head models were generated for all participants and EF simulations were calculated for fixed vs. optimized coil location (Fp1/Fp2 vs. individualized maximal PPI location), orientation (AF7/AF8 vs. orientation optimization algorithm), and stimulation intensity (constant vs. adjusted intensity across the population). Results: Left medial amygdala with the highest (mean ± SD: 0.31±0.29) functional activity during drug cue exposure was selected as the subcortical seed region. Amygdala-to-whole brain PPI analysis showed a significant cluster in the prefrontal cortex (cluster size: 2462 voxels, cluster peak in MNI space: [25 39 35]) that confirms cortico-subcortical connections. The location of the voxel with the most positive amygdala-frontopolar PPI connectivity in each participant was considered as the individualized TMS target (mean ± SD of the MNI coordinates: [12.6 64.23 -0.8] ± [13.64 3.50 11.01]). Individual amygdala-frontopolar PPI connectivity in each participant showed a significant correlation with VAS scores after cue exposure (R=0.27, p=0.03). Averaged EF strength in a sphere with r = 5mm around the individualized target location was significantly higher in the optimized (mean ± SD: 0.99 ± 0.21) compared to the fixed approach (Fp1: 0.56 ± 0.22, Fp2: 0.78 ± 0.25) with large effect sizes (Fp1: p = 1.1e-13, Hedges'g = 1.5, Fp2: p = 1.7e-5, Hedges'g = 1.26). Adjustment factor to have identical 1 V/m EF strength in a 5mm sphere around the individualized targets ranged from 0.72 to 2.3 (mean ± SD: 1.07 ± 0.29). Conclusion: Our results show that optimizing coil orientation and stimulation intensity based on individualized TMS targets led to stronger electric fields in the targeted brain regions compared to a one-size-fits-all approach. These findings provide valuable insights for refining TMS therapy for SUDs by optimizing the modulation of cortico-subcortical circuits.
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OBJECTIVE: This study aimed to understand health care experiences among a sample of caregivers of children with TDs to inform future directions for improving the health care system. METHODS: We conducted a survey of caregivers of youth with TDs and used descriptive statistics and quantitative analyses to characterize the health care utilization practices of the sample. RESULTS: The majority (70%) of families first consulted their pediatrician/primary care provider, and caregivers reported receiving care in line with current best practice guidelines. However, caregivers in the current sample perceived a lack of knowledgeability on the part of their first providers, which significantly predicted more providers seen and also reported difficulty finding specialty providers (63% of the sample reported difficulty finding a treatment provider who understood tics). CONCLUSION: Results suggest that improving caregiver satisfaction with early health care experiences for their child's TD may help to relieve the burden on families and the health care system more broadly, along with continued efforts to increase the number of specialty providers available.
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Cuidadores , Trastornos de Tic , Niño , Adolescente , Humanos , Atención a la Salud , Aceptación de la Atención de SaludRESUMEN
INTRODUCTION: Comprehensive behavioral intervention for tics (CBIT) is an efficacious, first-line treatment for Tourette syndrome (TS) and other chronic or persistent tic disorders. However, CBIT's public health impact has been limited by suboptimal treatment access. Preliminary research has shown that providing CBIT over videoconference (teleCBIT) is a promising delivery method for patients who cannot access in-person care. However, extant studies have been small efficacy trials focused only on pediatric patients. Replication of these studies is needed in additional treatment settings and across a wider age range of patients, especially in light of advances in telehealth technology and increasing telehealth adoption among practitioners. METHODS: We conducted a single-arm trial to evaluate the feasibility, acceptability, and effectiveness of teleCBIT embedded in comprehensive, medical tic specialty clinics. From October 2016 to September 2018, patients were offered teleCBIT at their usual care appointments. Those who were interested and met inclusion/exclusion criteria received 8 sessions of CBIT guided by a manualized protocol. An independent evaluator, masked to treatment progress, administered assessments at baseline, post-treatment, and 3 and 6 months after treatment. RESULTS: Twenty-five percent of patients who were offered treatment initiated teleCBIT through the study, and all treatment initiators completed treatment. From pre- to post-treatment, decreases in Yale Global Tic Severity Scale (YGTSS) total tic severity scores showed a large effect size among pediatric patients (n = 19; t = 5.72, P < 0.001, d = 1.31) and a medium-to-large effect size for adult patients (n = 10, t = 1.41, P = 0.096, d = 0.664). Thirteen of 19 pediatric patients (68%) and 6 of 10 adult patients (60%) had a positive global treatment response at post-treatment. Patients rated the treatment as highly satisfactory. Ninety-three percent of sessions were free of substantial technical problems. DISCUSSION: Within the context of medical tic specialty clinics, teleCBIT demonstrated strong evidence of feasibility, acceptability, and preliminary effectiveness comparable to in-person treatment for both pediatric and adult patients. TeleCBIT warrants study in future research on enhancing care systems for patients with TS. TRIAL REGISTRY: https://clinicaltrials.gov/ct2/keydates/NCT04007913.
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There are little data concerning clinical characteristics of women with Tourette disorder and chronic tic disorders in the extant literature and what is available mostly focuses on treatment-seeking individuals. The present research was conducted to provide a phenomenological characterization of tic disorders among 185 adult women with tic disorders. In addition to providing a descriptive overview of specific tic symptoms, tic severity, self-reported history of other psychiatric conditions, and impairment/lifestyle impact due to tics, this study compares 185 women and 275 men between 18 and 79 years old with tic disorders (who completed an identical battery of measures) based on demographic, social/economic status indicators, psychiatric variables (comorbidity, family psychiatric history, symptom presentation), adaptive functioning/quality of life, and impairment variables among a nonclinical adult sample. Finally, this research examines the relationship between tic severity and impairment indicators among women with tics. Sixty-eight percent of women in our sample reported severe motor tics and 40% reported severe phonic tics. Our exploratory data suggest that a sizeable number of adult women with persistent tics are suffering from psychiatric comorbidity and psychosocial consequences such as underachievement and social distress. Tic severity in women may be associated with lifestyle interference as well as with symptoms of depression and anxiety, and such symptoms may be more common among women with tics than in men with tics.
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Actividades Cotidianas , Adaptación Psicológica , Costo de Enfermedad , Calidad de Vida , Síndrome de Tourette/rehabilitación , Adulto , Anciano , Ansiedad/epidemiología , Comorbilidad , Depresión/epidemiología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Índice de Severidad de la Enfermedad , Factores Sexuales , Factores Socioeconómicos , Trastornos de Tic/diagnóstico , Trastornos de Tic/epidemiología , Trastornos de Tic/psicología , Síndrome de Tourette/epidemiología , Síndrome de Tourette/psicología , Estados Unidos/epidemiologíaRESUMEN
Chronic tic disorders including Tourette syndrome have negative impact across multiple functional domains. We explored associations between peer victimization status and tic subtypes, premonitory urges, internalizing symptoms, explosive outbursts, and quality of life among youth with chronic tic disorders, as part of the internet-based omnibus Tourette Syndrome Impact Survey. A mixed methods design combined child self-report and parental proxy-report (i.e., parent reporting on the child) demographic and quantitative data for affected youth ages 10-17 years addressing gender, mean age, ethnicity and other socioeconomic features, and presence of tic disorders and co-occurring psychiatric disorders. Peer "Victim" versus "Non-victim" status was determined using a subset of four questions about being bullied. "Victim" status was identified for those youth who endorsed the frequency of the occurrence of being bullied in one or more of the four questions as "most of the time" or "all of the time". Data from 211 eligible youth respondents and their parents/guardians showed 26% reporting peer victimization. Victim status was associated with greater tic frequency, complexity and severity; explosive outbursts; internalizing symptoms; and lower quality of life. Peer victimization among youth with chronic tic disorders is common and appears associated with tic morbidity, anxiety, depression, explosive outbursts, and poorer psychosocial functioning. Anticipatory guidance, specific bullying screening and prevention, and further studies are indicated in this population.
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Acoso Escolar/psicología , Víctimas de Crimen/psicología , Grupo Paritario , Trastornos de Tic/psicología , Síndrome de Tourette/psicología , Adolescente , Trastornos de Ansiedad/psicología , Niño , Trastorno Depresivo/psicología , Femenino , Humanos , Control Interno-Externo , Masculino , Tamizaje Masivo , Trastorno Obsesivo Compulsivo/psicología , Calidad de Vida/psicología , Ajuste SocialRESUMEN
Few studies have used task-based functional connectivity (FC) magnetic resonance imaging to examine emotion-processing during the critical neurodevelopmental period of adolescence in Autism Spectrum Disorders (ASDs). Moreover, task designs with pervasive confounds (e.g., lack of appropriate controls) persist because they activate neural circuits of interest reliably. As an alternative approach to "subtracting" activity from putative control conditions, we propose examining FC across an entire task run. By pivoting our analysis and interpretation of existing paradigms, we may better understand neural response to non-focal instances of socially-relevant stimuli that approximate real-world experiences more closely. Hence, using two well-established affective tasks (face-viewing, face-matching) with diverging social-cognitive demands, we investigated extrinsic FC from amygdala (AMG) and fusiform gyrus (FG) seeds in typically-developing (TD; N = 17) and ASD (N = 17) male adolescents (10-18 yo) and clinical correlations (Social Communication Questionnaire; SCQ) of group FC differences. Participant data (4TD, 6ASD) with excessive head-motion were excluded from final analysis. Direct between-group comparisons revealed significant differences between groups for neural response but not task performance (accuracy, reaction time). During face-viewing, we found greater FC from AMG and FG seeds for ASD participants (ASD > TD) in regions involved in the Default Mode and Fronto-Parietal Task Control Networks. During face-matching, we found greater FC from AMG and FG seeds for TD participants (TD > ASD), in regions associated with the Salience, Dorsal Attention, and Somatosensory Networks. SCQ scores correlated positively with regions with group differences on the face-viewing task and negatively with regions identified for the face-matching task. Task-dependent group differences in FC despite comparable behavioral performance suggest that high-functioning ASD may wield compensatory strategies; clinically-correlated FC patterns may associate with differential task-demands, ecological validity, and context-dependent processing. Employing this novel approach may further the development of targeted therapeutic interventions informed by individual differences in the highly heterogeneous ASD population.
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Trastorno del Espectro Autista , Adolescente , Trastorno del Espectro Autista/diagnóstico por imagen , Encéfalo/diagnóstico por imagen , Mapeo Encefálico/métodos , Cognición , Humanos , Imagen por Resonancia Magnética/métodos , Masculino , Vías Nerviosas/diagnóstico por imagenRESUMEN
Prior research has demonstrated that chronic tic disorders (CTD) are associated with functional impairment across several domains. However, methodological limitations, such as data acquired by parental report, datasets aggregated across child and adult samples, and small treatment-seeking samples, curtail interpretation. The current study explored the functional impact of tics among youth in a large, "virtual" community sample. An Internet-based survey was completed by families with children who had CTD. The sample included 740 parents and 232 of their children (ages 10-17 years). The survey assessed impact across five functional domains: physical, social, familial, academic, and psychological. Health-related quality of life and perceptions of discrimination resulting from tics were also assessed. Results suggest that (1) youth with CTD experience mild to moderate functional impairment, (2) impairment is generally positively correlated with tic severity, (3) children with CTD plus one or more co-occurring psychiatric conditions tend to have greater functional impairment, and (4) a notable portion of youth with CTD experience discrimination due to tics. Implications and limitations of these findings are discussed.
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Costo de Enfermedad , Calidad de Vida/psicología , Trastornos de Tic/psicología , Adolescente , Ansiedad/psicología , Niño , Emociones , Femenino , Encuestas Epidemiológicas , Humanos , Masculino , Psicometría , Índice de Severidad de la Enfermedad , Encuestas y CuestionariosRESUMEN
Multimodal approaches combining cognitive behavioral therapies (CBT) with non-invasive brain stimulation (NIBS) hold promise for improving the treatment of neuropsychiatric disorders. As this is a relatively new approach, it is a critical time to identify guiding principles and methodological considerations to enhance research rigor. In the current paper, we argue for a principled approach to CBT and NIBS pairings based on synergistic activation of neural circuits and identify key considerations about CBT that may influence pairing with NIBS. Careful consideration of brain-state interactions and CBT-related nuances will increase the potential for these combinations to be positively synergistic.
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Objectives: Little is known about the longitudinal course of pediatric acute-onset neuropsychiatric syndrome (PANS) because existing literature is primarily cross-sectional. To begin to address this gap, two digital platforms were used to prospectively monitor neuropsychiatric symptoms in children with PANS. The aim was to identify baseline clinical characteristics that would predict the course of neuropsychiatric symptoms over 12 weeks. We compared relative compliance between two electronic data acquisition platforms and evaluated agreement between parent-child ratings of symptoms. Methods: For 12 weeks, 20 children with PANS and their parents completed weekly rating scales of neuropsychiatric symptoms on Research Electronic Data Capture (REDCap) and concurrently parents completed tri-weekly ratings on My Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) Chart, a symptom monitoring website. Longitudinal data were analyzed by using regression analyses. Results: Greater duration of time between onset of PANS and study enrollment was associated with worsening of parent-rated neuropsychiatric symptoms over 12 weeks (p = 0.05). Higher scores on parents' Caregiver Burden Inventory at baseline predicted that children would report more severe symptoms over the 12-week period (p = 0.01). Compliance rates for parents were 86.3% for the weekly REDCap PANS Symptoms Rating Scale compared with 53.8% for the tri-weekly My PANDAS Chart ratings. There was moderate agreement between children and parents on the PANS Symptom Rating Scale (r = 0.55, p < 0.0001). Conclusion: Our study highlights the utility of electronic methods for tracking longitudinal symptoms in children with PANS and suggests that particular baseline characteristics (e.g., delay in identification and treatment of PANS, greater caregiver burden) may be indicative of a differential trajectory of PANS course, with more severe symptoms over the short term. clinicaltrials.gov NCT04382716.
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Enfermedades Autoinmunes/terapia , Escalas de Valoración Psiquiátrica Breve , Recolección de Datos , Internet , Trastorno Obsesivo Compulsivo/terapia , Padres/psicología , Adolescente , Niño , Estudios Transversales , Femenino , Humanos , Masculino , Proyectos Piloto , Estudios Prospectivos , Autoinforme , Infecciones Estreptocócicas , Encuestas y Cuestionarios/estadística & datos numéricosRESUMEN
Consistent with international reports,1 this group of Tourette syndrome (TS) experts has noticed a recent increase in adolescents presenting with tic-like symptoms that show a markedly atypical onset and course. These sudden-onset motor movements and vocalizations are often associated with significant impairment and disability, resulting in emergency department visits and hospitalizations for some affected youths.