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1.
Epilepsy Behav ; 127: 108548, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-35042160

RESUMO

OBJECTIVE: To develop a classifier that predicts reductions in depression severity in people with epilepsy after participation in an epilepsy self-management intervention. METHODS: Ninety-three people with epilepsy from three epilepsy self-management randomized controlled trials from the Managing Epilepsy Well (MWE) Network integrated research database met the inclusion criteria. Supervised machine learning algorithms were utilized to develop prediction models for changes in self-reported depression symptom severity. Features considered by the machine learning classifiers include age, gender, race, ethnicity, education, study type, baseline quality of life, and baseline depression symptom severity. The models were trained and evaluated on their ability to predict clinically meaningful improvement (i.e., a reduction of greater than three points on the nine-item Patient Health Questionnaire (PHQ-9)) between baseline and follow-up (<=12 weeks) depression scores. Models tested were a Multilayer Perceptron (ML), Random Forest (RF), Support Vector Machine (SVM), Logistic Regression with Stochastic Gradient Descent (SGD), K-nearest Neighbors (KNN), and Gradient Boosting (GB). A separate, outside dataset of 41 people with epilepsy was used in a validation exercise to examine the top-performing model's generalizability and performance with external data. RESULTS: All six classifiers performed better than our baseline mode classifier. Support Vector Machine had the best overall performance (average area under the curve [AUC] = 0.754, highest subpopulation AUC = 0.963). Our analysis of the SVM features revealed that higher baseline depression symptom severity, study type (i.e., intervention program goals), higher baseline quality of life, and race had the strongest influence on increasing the likelihood that a subject would experience a clinically meaningful improvement in depression scores. From the validation exercise, our top-performing SVM model performed similarly or better than the average SVM model with the outside dataset (average AUC = 0.887). SIGNIFICANCE: We trained an SVM classifier that offers novel insight into subject-specific features that are important for predicting a clinically meaningful improvement in subjective depression scores after enrollment in a self-management program. We provide evidence for machine learning to select subjects that may benefit most from a self-management program and indicate important factors that self-management programs should collect to develop improved digital tools.


Assuntos
Epilepsia , Autogestão , Depressão/diagnóstico , Depressão/etiologia , Depressão/terapia , Epilepsia/complicações , Epilepsia/terapia , Humanos , Qualidade de Vida , Máquina de Vetores de Suporte
2.
Epilepsy Behav ; 125: 108388, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34798558

RESUMO

OBJECTIVE: Although psychiatric disorders are more common among people with epilepsy,2 depression and suicidal ideation among Hispanics with epilepsy remain understudied. We examined the prevalence and correlates of depression and suicidal ideation among Hispanic adults with epilepsy who participated in self-management studies in the Managing Epilepsy Well3 Network. METHODS: This cross-sectional analysis of pooled data from ten studies used the Patient Health Questionnaire-94 or Neurological Disease Depression Inventory-Epilepsy5 to examine the prevalence of elevated depressive symptoms (PHQ ≥ 10, NDDI-E ≥ 15) and suicidal ideation (PHQ-9 item 9 ≥ 1, NDDI-E item 4 ≥ 2). Multilevel mixed-effects logistic regression models examined associations between ethnicity, elevated depressive symptoms, and suicidal ideation among PWE. Secondary analyses examined correlates of elevated depressive symptoms and suicidal ideation among Hispanic PWE. RESULTS: Of 559 participants, 49.6% (n = 277) were Hispanic. Elevated depressive symptoms were endorsed by 38.1% (n = 213) of all participants (32.5% of Hispanics); suicidal ideation was endorsed by 18.4% (n = 103) of all participants (16.3% of Hispanics). After adjustment for sociodemographic and health attributes, Hispanic PWE had a 44% lower prevalence of elevated depressive symptoms (OR = 0.56, CI 0.37-0.84, p = 0.0056) compared to non-Hispanics but similar rates of suicidal ideation (OR = 0.84, CI 0.45-1.58, p = 0.59). Acculturation measures were available for 256 (92.4%) of Hispanic PWE: language preference was Spanish for 62.9%, 46.1% were foreign-born. Spanish-speaking Hispanics were less likely than English-speaking Hispanics to report elevated depressive symptoms (OR = 0.43, CI 0.19-0.97, p = 0.041); however, Hispanics who reported fair or poor health status had a four-fold higher depression prevalence compared to those who reported excellent or very good health status [reference group] (OR = 4.44, CI 1.50-13.18, p = 0.0071). Of the Hispanics who provided prior 30-day seizure data, ≥1 monthly seizure was independently associated with higher depression prevalence (OR = 3.11, CI 1.29-7.45, p = 0.01). Being foreign-born was not associated with elevated depressive symptoms or suicidal ideation prevalence. CONCLUSIONS: In a large, geographically diverse sample of PWE, elevated depressive symptoms were significantly lower in Hispanics compared to non-Hispanics. Spanish language preference was associated with a lower prevalence of elevated depressive symptoms among Hispanic PWE. Future studies should include acculturation data to better screen for depression and suicidal ideation risk and optimize interventions for Hispanic PWE.


Assuntos
Epilepsia , Suicídio , Adulto , Estudos Transversais , Depressão/epidemiologia , Epilepsia/epidemiologia , Humanos , Ideação Suicida
3.
Epilepsy Behav ; 115: 107650, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-33421855

RESUMO

Epilepsy self-management (ESM) is the summative set of behaviors that people with epilepsy use to cope with seizures and optimize health. This report describes the implementation and evolution of the Managing Epilepsy Well Network Database (MEW DB), an integrated data resource intended to advance knowledge on ESM. The MEW DB utilizes a three-tiered (Tier 1-3) system of data organization, with tiers of data generally increasing in ascending complexity or collection burden. A MEW DB Steering Committee (SC) establishes consensus on planned analyses using a standardized new analysis request template. The data management structure facilitates harmonization and integration of additional data, or to update the database as new data become available. The current MEW DB comprises 1,563 people with epilepsy. Mean age was 39.9 years, 64.9% women (N = 1006), 12.8% African American (N = 170), 22.2% Hispanic (N = 306). On average, individuals have lived with epilepsy since their early 20s and are prescribed between 1 and 2 antiepileptic drugs. The MEW DB spans multiple socio-ecological levels to provide a robust multi-tiered framework for studying ESM. A total of 41 common data elements have been identified through iterative consensus. This integrated database takes advantage of an extensive collective background of archival evidence in ESM and brings together engaged investigators to build a dataset that represents diverse types of individuals with epilepsy, targets health domains important to ESM, and facilitates analyses that would not be possible with sites operating independently. Overall, the MEW DB serves the greater mission of this research collaborative and has potential to advance ESM research.


Assuntos
Epilepsia , Autogestão , Adulto , Anticonvulsivantes , Elementos de Dados Comuns , Epilepsia/terapia , Feminino , Humanos , Masculino , Qualidade de Vida , Convulsões
4.
Epilepsia ; 61(6): 1129-1141, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32401339

RESUMO

OBJECTIVE: The Program of Active Consumer Engagement in Self-Management in Epilepsy (PACES) is an evidenced-based self-management intervention for adults with epilepsy. Prior randomized controlled trial (RCT) data show that PACES reduces depression and improves self-management, self-efficacy, and quality of life for 6 months postprogram. The objective of this study was to replicate a PACES RCT with key extensions: more diverse patient pool from community-based epilepsy centers; option for telephone-based participation; and longer follow-up (12 months with booster support for intervention group), to examine duration of impact and inform dissemination and implementation. METHODS: Participants were adults with chronic epilepsy (n = 101) without serious mental illness or substantive intellectual impairment, recruited from three epilepsy centers. Participants were randomly assigned to intervention or waitlist control groups. Outcomes included the Epilepsy Self-Management Scale (ESMS), Epilepsy Self-Efficacy Scale (ESES), Quality of Life in Epilepsy-31, Patient Health Questionnaire-9, and Generalized Anxiety Disorder-7, administered at baseline, postintervention (8 weeks), and 6 and 12 months postintervention. Intervention was an 8-week group of five to eight adults co-led by a psychologist and trained peer with epilepsy that met once per week by teleconference or in person at a hospital for 60-75 minutes. Topics included medical, psychosocial, cognitive, and self-management aspects of epilepsy, as well as community integration and epilepsy-related communication. Treatment group provided program evaluation. RESULTS: PACES participants (n = 49) improved relative to controls (n = 52) on the ESES (P < .022) and overall distress composite (P = .008). At 6 months, PACES participants remained improved on the ESES (P = .008) and composite (P = .001), and were improved on the ESMS (P = .005). At 12 months, PACES participants remained improved on the ESMS (P = .006) and were improved on an overall distress composite of combined measures (P = .018). Attrition was low (<6% in each group), and all program satisfaction ratings exceeded 4.0/5.0. SIGNIFICANCE: A consumer-generated epilepsy self-management program with broad psychosocial and medical emphasis can be effectively delivered by telephone or in person and facilitates long-term epilepsy self-management, adjustment, and coping up to 1 year after treatment.


Assuntos
Participação da Comunidade/métodos , Participação da Comunidade/psicologia , Epilepsia/psicologia , Epilepsia/terapia , Autogestão/métodos , Autogestão/psicologia , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Participação do Paciente/métodos , Participação do Paciente/psicologia
5.
Epilepsy Behav ; 102: 106698, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31785487

RESUMO

Specialized vocational rehabilitation (VR) programs in epilepsy have routinely performed more successfully than general or state-federal VR programs. This article presents the key areas of emphasis in successful epilepsy VR program development to include initial program drivers, choice of VR services model, perspectives on program elements, clients, staffing, service evaluation metrics, operational considerations, and the partnering sponsor's personnel support. Considerable emphasis is placed on the importance and diversity of funding in sustaining a specialized epilepsy VR program. This template of considerations provides potential program implementers with a general framework for successful epilepsy VR program development.


Assuntos
Emprego/métodos , Epilepsia/reabilitação , Desenvolvimento de Programas/métodos , Reabilitação Vocacional/métodos , Emprego/economia , Emprego/psicologia , Epilepsia/economia , Epilepsia/psicologia , Humanos , Desenvolvimento de Programas/economia , Reabilitação Vocacional/economia , Reabilitação Vocacional/psicologia
6.
Epilepsy Behav ; 103(Pt A): 106504, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31648928

RESUMO

PURPOSE: Seizures have a variety of significant physical, cognitive, and social effects upon the individual. Depression has been linked to an increase in seizure activity, and Project Using Practice and Learning to Increase Favorable Thoughts (UPLIFT) was shown to reduce depressive symptoms. Project UPLIFT, based upon mindfulness-based cognitive therapy (MBCT), provides distance delivery of depression management skills to groups of people with epilepsy. Because Project UPLIFT reduces depression and depression is linked to seizure activity, the current analysis was designed to determine the impact of Project UPLIFT upon seizure frequency and severity. METHOD: Participants (n = 107) were adults ages 21-70 with epilepsy and mild-to-moderate depressive symptoms from the states of Georgia, Michigan, Texas, and Washington. The eight-session Project UPLIFT intervention was group-delivered weekly via the web or telephone. Participants were randomly assigned to condition (i.e., Project UPLIFT or a treatment-as-usual [TAU] waitlist) and assessed at baseline, and after intervening in the Project UPLIFT group (~10 weeks). Assessments included valid self-report measures of seizure frequency and severity and depression. RESULTS: Mediation analysis found that there was a significant negative direct relationship between condition and number of seizures at posttest; the mean number of seizures decreased by 3.2 in the Project UPLIFT group, but increased by 2.3 in the TAU group. The indirect path from condition to number of seizures through change in depression was not significant. Conversely, there was no significant negative direct relationship between condition and seizure severity at posttest, although the seizure severity decreased by 2.2 points in the UPLIFT group and increased by 2.7 points in the TAU group. The indirect path from condition to seizure severity through depression was significant, however, demonstrating that change in depression mediated the effect of Project UPLIFT on seizure severity. CONCLUSIONS: This study found that participating in Project UPLIFT directly reduced the number of seizures experienced by participants with epilepsy. This was not mediated by the change in depression. Participation in Project UPLIFT also reduced their perceived seizure severity indirectly, through reducing their depressive symptoms. This suggests Project UPLIFT may have the potential to impact the health, healthcare costs, and well-being of people with epilepsy.


Assuntos
Terapia Cognitivo-Comportamental , Depressão/terapia , Epilepsia/psicologia , Epilepsia/terapia , Convulsões/psicologia , Convulsões/terapia , Autogestão , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Atenção Plena , Qualidade de Vida , Adulto Jovem
7.
Epilepsia ; 60(9): 1921-1931, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31486072

RESUMO

OBJECTIVE: To assess depressive symptom outcomes in a pooled sample of epilepsy self-management randomized controlled trials (RCTs) from the Managing Epilepsy Well (MEW) Network integrated research database (MEW DB). METHODS: Five prospective RCTs involving 453 adults with epilepsy compared self-management intervention (n = 232) versus treatment as usual or wait-list control outcomes (n = 221). Depression was assessed with the nine-item Patient Health Questionnaire. Other variables included age, gender, race, ethnicity, education, income, marital status, seizure frequency, and quality of life. Follow-up assessments were collapsed into a visit 2 and a visit 3; these were conducted postbaseline. RESULTS: Mean age was 43.5 years (SD = 12.6), nearly two-thirds were women, and nearly one-third were African American. Baseline sample characteristics were mostly similar in the self-management intervention group versus controls. At follow-up, the self-management group had a significantly greater reduction in depression compared to controls at visit 2 (P < .0001) and visit 3 (P = .0002). Quality of life also significantly improved in the self-management group at visit 2 (P = .001) and visit 3 (P = .005). SIGNIFICANCE: Aggregate MEW DB analysis of five RCTs found depressive symptom severity and quality of life significantly improved in individuals randomized to self-management intervention versus controls. Evidence-based epilepsy self-management programs should be made more broadly available in neurology practices.


Assuntos
Adaptação Psicológica/fisiologia , Depressão/complicações , Depressão/diagnóstico , Epilepsia/complicações , Qualidade de Vida , Autogestão , Adulto , Bases de Dados Factuais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos
8.
Epilepsy Behav ; 94: 301-306, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-30975571

RESUMO

Depression and worse quality of life (QOL) are significantly associated with epilepsy. However, limited descriptive data on depression and quality of life among African Americans with epilepsy are available. This study sought to describe the prevalence of depression among African Americans with epilepsy participating in self-management studies and to examine the relationship between depression and QOL. Using data from the Managing Epilepsy Well (MEW) research network, a subgroup of African Americans with epilepsy were selected for the analytic sample. Descriptive statistics indicated the prevalence of depression (Patient Health Questionnaire-9 [PHQ-9]) and reports of epilepsy-specific QOL (Quality of Life in Epilepsy-10 [QOLIE-10]) in the sample. Multiple linear regression examined the relationship between depression and QOL while controlling for sociodemographic characteristics and seizure frequency. The prevalence of depression (PHQ-9 ≥; 10) was 47.7%. Quality of life was the only variable significantly associated with depressive symptoms in multivariable analyses, suggesting that depressive symptoms have a stronger relationship with QOL than seizure frequency. With the high levels of depression and the significant relationship with QOL, regular screening of depression is needed among African Americans with epilepsy. Self-management programs that improve mood may also play an important role in improving the lives of African Americans with epilepsy.


Assuntos
Negro ou Afro-Americano/etnologia , Bases de Dados Factuais , Depressão/etnologia , Transtorno Depressivo/etnologia , Epilepsia/etnologia , Qualidade de Vida , Adulto , Comorbidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Autogestão
9.
Epilepsy Behav ; 85: 243-247, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29853255

RESUMO

While self-management (S-M) skills of people living with epilepsy (PWE) are increasingly recognized as important for daily functioning and quality of life, there is limited information on overall skill levels, specific areas needing improvement, or associated correlates. The purpose of this study was to provide evidence on the S-M skills of PWE and identify the demographic and clinical correlates that could be used in targeting interventions. Data were derived from the Managing Epilepsy Well (MEW) research network database containing epilepsy S-M data on 436 PWE participating in five studies conducted recently throughout the U.S. Common data elements included sociodemographics, clinical condition, and S-M behaviors covering five domains. Descriptive statistics and multivariate regression analyses found significant variation in total and domain-specific S-M skill levels and the associated characteristics of individuals. The findings from this national sample were remarkably consistent across sites and with existing theory and prior empirical studies indicating that competencies in information and lifestyle management were significantly lower than medication, safety, and seizure management. Self-management behavior levels were higher for females and those with less education, but lower in those with depression and lower quality of life. There were no significant differences by age, race/ethnicity, marital status, or seizure frequency after adjusting for other characteristics.


Assuntos
Centers for Disease Control and Prevention, U.S. , Redes Comunitárias , Epilepsia/psicologia , Epilepsia/terapia , Autogestão/métodos , Adulto , Centers for Disease Control and Prevention, U.S./tendências , Elementos de Dados Comuns , Redes Comunitárias/tendências , Estudos Transversais , Bases de Dados Factuais/tendências , Depressão/epidemiologia , Depressão/psicologia , Depressão/terapia , Epilepsia/epidemiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida/psicologia , Estados Unidos/epidemiologia
10.
Epilepsy Behav ; 87: 235-240, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-30115600

RESUMO

Depression is a common comorbidity in people with epilepsy (PWE) that negatively affects self-management and a variety of health outcomes. Suicidal ideation is also more common among PWE than the general population. We examined correlates of depressive symptoms and suicidal ideation in adults using pooled data from epilepsy self-management studies conducted by sites in the Centers for Disease Control and Prevention (CDC) Research Center's Managing Epilepsy Well (MEW) Network that assessed depression severity with the 9-item Patient Health Questionnaire (PHQ-9). Of the 770 subjects in the analysis (mean age 42.4 ±â€¯13.0 years), the mean total PHQ-9 score was 9.4 ±â€¯6.6 and 334 subjects (43.4%) had moderate to severe depressive symptoms (PHQ-9 ≥ 10). Only ongoing seizures and low education were associated with moderate-severe depressive symptoms in multiple logistic regression analysis. Suicidality (PHQ-9, item 9 score ≥ 1) was endorsed by 155 subjects (20.1%). Only nonsuicidal depressive symptoms were associated with suicidality in multiple variable logistic regression analysis. We show in this large and regionally diverse dataset that both depression and suicidal ideation are common among PWE enrolled in self-management studies. Future studies are needed to examine whether suicidality exists independently of other depressive symptoms in some populations with epilepsy and investigate other correlates of suicidality that may inform screening practices.


Assuntos
Centers for Disease Control and Prevention, U.S. , Depressão/epidemiologia , Epilepsia/epidemiologia , Autogestão/métodos , Ideação Suicida , Prevenção do Suicídio , Adulto , Comorbidade , Depressão/diagnóstico , Depressão/psicologia , Epilepsia/diagnóstico , Epilepsia/psicologia , Feminino , Humanos , Masculino , Programas de Rastreamento/métodos , Pessoa de Meia-Idade , Ensaios Clínicos Controlados Aleatórios como Assunto/métodos , Autogestão/psicologia , Suicídio/psicologia , Estados Unidos/epidemiologia
11.
Epilepsia ; 56(8): 1264-74, 2015 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-26122460

RESUMO

OBJECTIVE: Self-management challenges facing adults with epilepsy include limited understanding of the condition and treatment, associated psychosocial issues, and lack of community integration. Self-management interventions improve patients' medical, life role, and emotional management. Previous interventions, developed from expert opinion, indicated issues with participant engagement/retention, and limited follow-up periods. PACES in Epilepsy addressed methodologic concerns by utilizing patient needs assessment data (n = 165) to derive self-management content and program features for evaluation via randomized controlled trial (RCT). METHODS: Participants were adults with chronic epilepsy (n = 83), without serious mental illness or substantive intellectual impairment, who were recruited from two epilepsy centers. Participants were assigned randomly to intervention or treatment-as-usual groups. Outcomes included the Epilepsy Self-Management Scale (ESMS), Epilepsy Self-Efficacy Scale (ESES), Quality of Life in Epilepsy-31 (QOLIE-31), Patient Health Questionnaire-9 (PHQ-9), and the Generalized Anxiety Disorder-7 (GAD-7), administered at baseline, postintervention (8 weeks), and 6 months postintervention. The intervention was an 8-week group of 6-8 adults co-led by a psychologist and trained peer with epilepsy that met one evening per week at a hospital for 75 min. Topics included medical, psychosocial, cognitive, and self-management aspects of epilepsy, in addition to community integration and optimizing epilepsy-related communication. The treatment group provided satisfaction ratings regarding program features. RESULTS: PACES participants (n = 38) improved relative to controls (n = 40) on the ESMS (p < 0.001) and subscales [Information (p < 0.001); Lifestyle (p < 0.002)]; ESES (p < 0.001); and QOLIE-31 (p = 0.002). At 6-month follow up, PACES participants remained improved on the ESMS (p = 0.004) and Information subscale (p = 0.009); and Energy/Fatigue (p = 0.032) and Medication Effects (p = 0.005) of the QOLIE-31. Attrition in both groups was low (8% in each group) and all program satisfaction ratings exceeded 4.0/5.0, with leadership (4.76), topics (4.53), and location (4.30) as the most highly rated aspects. SIGNIFICANCE: A consumer generated epilepsy self-management program appears to be a promising intervention from multiple perspectives, particularly in relation to disability management.


Assuntos
Ansiedade/psicologia , Depressão/psicologia , Epilepsia/reabilitação , Avaliação das Necessidades , Qualidade de Vida/psicologia , Autocuidado , Autoeficácia , Adulto , Epilepsia/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto , Satisfação do Paciente , Resultado do Tratamento
12.
Arch Phys Med Rehabil ; 96(12): 2128-36, 2015 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-26278493

RESUMO

OBJECTIVE: To describe the 10-year patterns of employment for individuals of working age discharged from a Traumatic Brain Injury Model Systems (TBIMS) center between 1989 and 2009. DESIGN: Secondary data analysis. SETTING: Inpatient rehabilitation centers. PARTICIPANTS: Patients aged 16 to 55 years (N=3618) who were not retired at injury, received inpatient rehabilitation at a TBIMS center, were discharged alive between 1989 and 2009, and had at least 3 completed follow-up interviews at postinjury years 1, 2, 5, and 10. INTERVENTIONS: Not applicable. MAIN OUTCOMES MEASURE: Employment. RESULTS: Patterns of employment were generated using a generalized linear mixed model, where these patterns were transformed into temporal trajectories of probability of employment via random effects modeling. Covariates demonstrating significant relations to growth parameters that govern the trajectory patterns were similar to those noted in previous cross-sectional research and included age, sex, race/ethnicity, education, preinjury substance misuse, preinjury vocational status, and days of posttraumatic amnesia. The calendar year in which the injury occurred also greatly influenced trajectories. An interactive tool was developed to provide visualization of all postemployment trajectories, with many showing decreasing probabilities of employment between 5 and 10 years postinjury. CONCLUSIONS: These results highlight that postinjury employment after moderate to severe traumatic brain injury (TBI) is a dynamic process, with varied patterns of employment for individuals with specific characteristics. The overall decline in trajectories of probability of employment between 5 and 10 years postinjury suggests that moderate to severe TBI may have unfavorable chronic effects and that employment outcome is highly influenced by national labor market forces. Additional research targeting the underlying drivers of the decline between 5 and 10 years postinjury is recommended, as are interventions that target influencing factors.


Assuntos
Lesões Encefálicas/reabilitação , Pessoas com Deficiência/estatística & dados numéricos , Emprego/estatística & dados numéricos , Adolescente , Adulto , Fatores Etários , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Recuperação de Função Fisiológica , Centros de Reabilitação , Pesquisa de Reabilitação , Fatores Sexuais , Fatores Socioeconômicos , Índices de Gravidade do Trauma , Adulto Jovem
14.
Epilepsy Behav ; 25(2): 150-5, 2012 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-23032121

RESUMO

A consistent and serious empirical issue in the epilepsy self-management literature involves dropout and attrition in intervention studies. One explanation for this issue revolves around "top-down" intervention designs (i.e., interventions generated by epilepsy clinicians and researchers) and the potential for disparity with patient interests, capabilities, and perceived needs. The purpose of this study was to extend the work of Fraser et al. (2011) [19] by comparing perceptions regarding self-management problems, topics, and program design, between two subgroups of adult patients with epilepsy (n=165) and epilepsy clinicians (n=20). Results indicate differences in problem severity ratings, program emphasis (i.e., goal-setting, coping, education), and program leadership between clinicians and each patient subgroup to varying degrees. These findings highlight some of the differences in opinion between patients and clinicians and emphasize the need for patient-involved planning with regard to self-management programs. Implications and explanations are offered as points for consideration in self-management program development.


Assuntos
Atitude do Pessoal de Saúde , Epilepsia/terapia , Conhecimentos, Atitudes e Prática em Saúde , Autocuidado/métodos , Adolescente , Adulto , Idoso , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Índice de Gravidade de Doença , Inquéritos e Questionários
16.
Epilepsy Res ; 187: 107034, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-36272309

RESUMO

OBJECTIVE: The Managing Epilepsy Well (MEW) Network conducts epilepsy self-management (ESM) intervention development, testing, and archival clinical trials data analyses in the MEW Network Integrated Database (MEW-DB). However, not all trial participants fully benefit from ESM due to prematurely discontinuing program participation. This analysis sought to identify demographic and clinical predictors of premature discontinuation (PD) of ESM interventions available in the MEW-DB. METHODS: Data from prior studies were included if: 1) they were prospective trials testing an ESM intervention, 2) included baseline assessment and at least one post-intervention assessment, and 3) included data on PD. Dependent variables were all-cause PD, categorized as a binary variable (yes/no) and time to PD for the intervals between baseline and follow-up visit 1 (V1; approximately week 12) and visit two (V2; approximately week 24). Multivariable Cox proportional hazard models were used to identify factors affecting PD time-point. Explanatory variables included age, gender, race/ethnicity, education, employment, income, marital status, psychiatric comorbidities, depressive severity, anxiety symptoms, self-efficacy, number of anti-seizure medications (ASMs), health status, seizure frequency, and study design. RESULTS: Six prior MEW-DB studies were included, consisting of 627 people, where 624 were assigned to ESM or to control. PD among randomized individuals was 14.3 % by V1 and 15.7 % by V2. Predictors for V1 PD were treatment (ESM) vs. control arm, more severe depressive symptoms and having schizophrenia. Predictors for V2 PD were younger age, white race, more severe depressive symptoms and having schizophrenia. SIGNIFICANCE: While ESM approaches can improve multiple health outcomes among people with epilepsy, nearly one in six individuals prematurely discontinues their program. These findings suggest that ESM interventionists need to be particularly attentive to program retention over the first 3 months after ESM initiation. Younger people with epilepsy, those who self-identify as white, those with schizophrenia, and/or more severe depressive symptoms may need additional support for engagement.


Assuntos
Epilepsia , Nascimento Prematuro , Autogestão , Feminino , Humanos , Estudos Prospectivos , Qualidade de Vida/psicologia , Epilepsia/diagnóstico , Ansiedade
17.
Epilepsy Behav ; 20(2): 291-8, 2011 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-21273135

RESUMO

Epilepsy self-management interventions have been investigated with respect to health care needs, medical adherence, depression, anxiety, employment, and sleep problems. Studies have been limited in terms of representative samples and inconsistent or restricted findings. The direct needs assessment of patients with epilepsy as a basis for program design has not been well used as an approach to improving program participation and outcomes. This study investigated the perceived medical and psychosocial problems of adults with epilepsy, as well as their preferences for self-management program design and delivery format. Results indicated a more psychosocially challenged subgroup of individuals with significant depressive and cognitive complaints. A self-management program that involves face-to-face individual or group meetings led by an epilepsy professional and trained peer leader for 60 minutes weekly was preferred. Six to eight sessions focused on diverse education sessions (e.g., managing disability and medical care, socializing on a budget, and leading a healthy lifestyle) and emotional coping strategies delivered on weeknights or Saturday afternoons were most highly endorsed. Emotional self-management and cognitive compensatory strategies require special emphasis given the challenges of a large subgroup.


Assuntos
Epilepsia , Avaliação das Necessidades/estatística & dados numéricos , Autocuidado/métodos , Adulto , Transtornos de Ansiedade/etiologia , Transtornos Cognitivos/etiologia , Depressão/etiologia , Epilepsia/diagnóstico , Epilepsia/psicologia , Epilepsia/terapia , Feminino , Inquéritos Epidemiológicos , Humanos , Masculino , Saúde Mental/estatística & dados numéricos , Pessoa de Meia-Idade , Distribuição Aleatória , Análise de Regressão , Estatísticas não Paramétricas , Inquéritos e Questionários
18.
Arch Phys Med Rehabil ; 92(10): 1552-60, 2011 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-21963122

RESUMO

OBJECTIVE: To evaluate the effect of a Scheduled Telephone Intervention (STI) compared with usual care (UC) on function, health/emotional status, community/work activities, and well-being at 1 and 2 years after traumatic brain injury (TBI). DESIGN: Two group, randomized controlled trial. SETTING: Telephone contacts with subjects recruited in inpatient rehabilitation. PARTICIPANTS: Eligible subjects (N=433) with TBI (age>16y) were randomly assigned to STI plus UC (n=210) or UC (n=223) at discharge. STI subjects (n=169) completed the outcome at year 1 (118 at year 2) and 174 UC subjects at year 1 (123 at year 2). INTERVENTIONS: STI subjects received calls at 2 and 4 weeks and 2, 3, 5, 7, 9, 12, 15, 18, and 21 months consisting of brief training in problem solving, education, or referral. MAIN OUTCOME MEASURES: A composite outcome at 1 year was the primary endpoint. Analysis on intent-to-treat basis used linear regression adjusted for site, Glasgow Coma Scale, race/ethnicity, age, FIM, sex, and Disability Rating Scale (DRS). Secondary analyses were conducted on individual and composite measures (FIM, DRS, community participation indicators, Glasgow Outcome Scale [Extended], Short Form-12 Health Survey, Brief Symptom Inventory-18, EuroQOL, and modified Perceived Quality of Life). RESULTS: No significant differences were noted between the groups at years 1 or 2 for primary (P=.987 regression for year 1, P=.983 for year 2) or secondary analyses. CONCLUSIONS: This study failed to replicate the findings of a previous single center study of telephone-based counseling. While telephone mediated treatment has shown promise in other studies, this model of flexible counseling in problem solving and education for varied problems was not effective over and above usual care.


Assuntos
Lesões Encefálicas/reabilitação , Telefone , Atividades Cotidianas , Adolescente , Adulto , Árvores de Decisões , Avaliação da Deficiência , Feminino , Escala de Coma de Glasgow , Humanos , Escala de Gravidade do Ferimento , Tempo de Internação/estatística & dados numéricos , Modelos Lineares , Masculino , Pessoa de Meia-Idade , Estatísticas não Paramétricas , Resultado do Tratamento
19.
Epilepsy Behav ; 19(3): 218-24, 2010 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-20869323

RESUMO

The Managing Epilepsy Well (MEW) Network was created in 2007 by the Centers for Disease Control and Prevention's (CDC) Prevention Research Centers and Epilepsy Program to promote epilepsy self-management research and to improve the quality of life for people with epilepsy. MEW Network membership comprises four collaborating centers (Emory University, University of Texas Health Science Center at Houston, University of Michigan, and University of Washington), representatives from CDC, affiliate members, and community stakeholders. This article describes the MEW Network's background, mission statement, research agenda, and structure. Exploratory and intervention studies conducted by individual collaborating centers are described, as are Network collaborative projects, including a multisite depression prevention intervention and the development of a standard measure of epilepsy self-management. Communication strategies and examples of research translation programs are discussed. The conclusion outlines the Network's role in the future development and dissemination of evidence-based epilepsy self-management programs.


Assuntos
Pesquisa Biomédica , Epilepsia/prevenção & controle , Serviços de Informação , Serviços Preventivos de Saúde/organização & administração , Pesquisa Biomédica/métodos , Pesquisa Biomédica/organização & administração , Centers for Disease Control and Prevention, U.S. , Comportamento Cooperativo , Epilepsia/epidemiologia , Humanos , Serviços Preventivos de Saúde/tendências , Estados Unidos/epidemiologia , Universidades
20.
J Occup Rehabil ; 20(4): 427-34, 2010 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-19834790

RESUMO

INTRODUCTION: The goal of this study was to assess the construct validity of the Affective Reactions subscale of the Disability Questionnaire by analyzing its underlying factor structure. The Affective Reactions subscale consists of 21 items measuring emotional reactions related to working with people with disabilities and contributes to the overall measurement of employers' attitudes toward individuals with disabilities. METHODS: The sample included 142 employers in Colorado Springs, Colorado. Exploratory factor analysis was used to examine the factorial structure of the Affective Reactions scale and multiple regression analysis was used to determine the relationship between affective reaction factors and ADA knowledge, perceived reasonableness of workplace accommodations, and experience working with people with disabilities. RESULTS: Exploratory factor analysis revealed three underlying attitude dimensions: (a) Negative Cognitive and Affective Reactions, (b) Positive Attitudes toward Accommodations, and (c) Positive Attitudes towards Equal Treatment of People with Disabilities in the Workplace. Multiple regression analysis results indicated that positive attitudes toward people with disabilities in the workplace are associated with positive beliefs about the reasonableness of accommodating people with disabilities in the workplace and positive attitudes are related to higher level of experience working with people with disabilities. CONCLUSIONS: The construct validity of the Affective Reactions subscale of the Disability Questionnaire is supported by the identification of three underlying attitudinal constructs.


Assuntos
Afeto , Atitude , Cognição , Pessoas com Deficiência , Preconceito , Local de Trabalho , Colorado , Análise Fatorial , Humanos , Reprodutibilidade dos Testes , Inquéritos e Questionários
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