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1.
Stroke ; : STROKEAHA119027160, 2020 Mar 23.
Artigo em Inglês | MEDLINE | ID: mdl-32200759

RESUMO

Background and Purpose- Lowering blood pressure and cholesterol, antiplatelet/antithrombotic use, and smoking cessation reduce risk of recurrent stroke. However, gaps in risk factor control among stroke survivors warrant development and evaluation of alternative care delivery models that aim to simultaneously improve multiple risk factors. Randomized trials of care delivery models are rarely of sufficient duration or size to be powered for low-frequency outcomes such as observed recurrent stroke. This creates a need for tools to estimate how changes across multiple stroke risk factors reduce risk of recurrent stroke. Methods- We reviewed existing evidence of the efficacy of interventions addressing blood pressure reduction, cholesterol lowering, antiplatelet/antithrombotic use, and smoking cessation and extracted relative risks for each intervention. From this, we developed a tool to estimate reductions in recurrent stroke risk, using bootstrapping and simulation methods. We also calculated a modified Global Outcome Score representing the proportion of potential benefit (relative risk reduction) achieved if all 4 individual risk factors were optimally controlled. We applied the tool to estimate stroke risk reduction among 275 participants with complete 12-month follow-up data from a recently published randomized trial of a healthcare delivery model that targeted multiple stroke risk factors. Results- The recurrent stroke risk tool was feasible to apply, yielding an estimated reduction in the relative risk of ischemic stroke of 0.36 in both the experimental and usual care trial arms. Global Outcome Score results suggest that participants in both arms likely averted, on average, 45% of recurrent stroke events that could possibly have been prevented through maximal implementation of interventions for all 4 individual risk factors. Conclusions- A stroke risk reduction tool facilitates estimation of the combined impact on vascular risk of improvements in multiple stroke risk factors and provides a summary outcome for studies testing alternative care models to prevent recurrent stroke. Registration URL: https://www.clinicaltrials.gov; Unique identifier: NCT00861081.

2.
Contemp Clin Trials Commun ; 16: 100468, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31701042

RESUMO

Many people with HIV (PWH) experience chronic pain that limits daily function and quality of life. PWH with chronic pain have commonly been prescribed opioids, sometimes for many years, and it is unclear if and how the management of these legacy patients should change in light of the current US opioid epidemic. Guidelines, such as the Centers for Disease Control and Prevention Guideline for Prescribing Opioids for Chronic Pain (CDCG), provide recommendations for the management of such patients but have yet to be translated into easily implementable interventions; there is also a lack of strong evidence that adhering to these recommendations improves patient outcomes such as amount of opioid use and pain levels. Herein we describe the development and preliminary testing of a theory-based intervention, called TOWER (TOWard SafER Opioid Prescribing), designed to support HIV primary care providers in CDCG-adherent opioid prescribing practices with PWH who are already prescribed opioids for chronic pain. TOWER incorporates the content of the CDCG into the theoretical and operational framework of the Information Motivation and Behavioral Skills (IMB) model of health-related behavior. The development process included elicitation research and incorporation of feedback from providers and PWH; testing is being conducted via an adaptive feasibility clinical trial. The results of this process will form the basis of a large, well-powered clinical trial to test the effectiveness of TOWER in promoting CDCG-adherent opioid prescribing practices and improving outcomes for PWH with chronic pain.

3.
Neurology ; 92(16): e1831-e1842, 2019 04 16.
Artigo em Inglês | MEDLINE | ID: mdl-30902908

RESUMO

OBJECTIVE: To test effects on care quality of Chronic Care Model-based Parkinson disease (PD) management. METHODS: This 2-group stratified randomized trial involved 328 veterans with PD in southwestern United States. Guided care management, led by PD nurses, was compared to usual care. Primary outcomes were adherence to 18 PD care quality indicators. Secondary outcomes were patient-centered outcome measures. Data sources were telephone survey and electronic medical record (EMR). Outcomes were analyzed as intent-to-treat comparing initial and final survey and repeated-measures mixed-effects models. RESULTS: Average age was 71 years; 97% of participants were male. Mean proportion of participants receiving recommended PD care indicators was significantly higher for the intervention than for usual care (0.77 vs 0.58) (mean difference 0.19, 95% confidence interval [CI] 0.16, 0.22). Of 8 secondary outcomes, the only significant difference of the changes over time was in the positive Patient Health Questionnaire-2 depression screen for intervention minus usual care (-11.52 [95% CI -20.42, -2.62]). CONCLUSION: A nurse-led chronic care management intervention, Care Coordination for Health Promotion and Activities in Parkinson's Disease (CHAPS), substantially increased adherence to PD quality of care indicators among veterans with PD, as documented in the EMR. Of 8 secondary outcomes assessed, a screening measure for depressive symptomatology was the only measure that was better in the intervention compared to usual care. More telephone calls in CHAPS were the only utilization difference over usual care. While CHAPS appears promising for improving PD care, additional iterative research is needed to refine the CHAPS model in routine clinical care so that it measurably improves patient-centered outcomes (NCT01532986). CLASSIFICATION OF EVIDENCE: This study provides Class I evidence that for patients with PD, CHAPS increased adherence to PD quality of care indicators.


Assuntos
Doença de Parkinson/terapia , Melhoria de Qualidade , Idoso , Gerenciamento Clínico , Feminino , Seguimentos , Promoção da Saúde , Humanos , Masculino , Enfermeiras e Enfermeiros , Cooperação e Adesão ao Tratamento , Resultado do Tratamento , Veteranos
5.
Epilepsy Behav ; 83: 7-12, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29631157

RESUMO

PURPOSE: Anxiety and depression have been associated with poor seizure control after epilepsy surgery. This study explored the effect of presurgical anxiety or depression on two- and five-year seizure control outcomes. METHODS: Adult subjects were enrolled between 1996 and 2001 in a multicenter prospective study to evaluate outcomes of resective epilepsy surgery. A Poisson regression was used to analyze the association of depression and anxiety with surgical outcome, while adjusting for gender, age, ethnicity, number of years with seizures, and presence of mesial temporal sclerosis. RESULTS: The relative risk (RR) of presurgical depression on two-year seizure-free outcome in this cohort is 1.12 (95% confidence interval (CI), 0.84-1.49) and 1.06 (CI, 0.73-1.55) on five-year seizure free outcome. The RR of presurgical anxiety on two-year seizure outcome is 0.73 (CI, 0.50-1.07) and 0.70 (CI, 0.43-1.17) on five-year seizure outcome. When including Engel classes I and II, the RRs of presurgical depression, anxiety, or both two years after surgery were 0.96 (p=0.59), 0.73 (p<0.05), and 0.97 (p=0.70), respectively, and they were 0.97 (p=0.82), 0.84 (p=0.32), and 0.89 (p=0.15), respectively, five years after surgery. Only presurgical anxiety was associated with worse epilepsy surgery outcome two year after surgery but not at five years postsurgery. Depression was not a risk factor for poor epilepsy surgical outcome in the long term. CONCLUSION: These findings from a prospective study that utilized a standardized protocol for psychiatric and seizure outcome assessment suggest that presurgical mood disorders have no substantial impact on postsurgical seizure outcome for up to five years after surgery.


Assuntos
Ansiedade/psicologia , Depressão/psicologia , Epilepsia Resistente a Medicamentos/psicologia , Epilepsia Resistente a Medicamentos/cirurgia , Adolescente , Adulto , Ansiedade/epidemiologia , Estudos de Coortes , Depressão/epidemiologia , Epilepsia Resistente a Medicamentos/epidemiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Pré-Operatórios/psicologia , Cuidados Pré-Operatórios/tendências , Estudos Prospectivos , Fatores de Risco , Fatores de Tempo , Resultado do Tratamento , Adulto Jovem
6.
Circ Cardiovasc Qual Outcomes ; 11(1): e003228, 2018 01.
Artigo em Inglês | MEDLINE | ID: mdl-29321134

RESUMO

BACKGROUND: Disparities of care among stroke survivors are well documented. Effective interventions to improve recurrent stroke preventative care in vulnerable populations are lacking. METHODS AND RESULTS: In a randomized controlled trial, we tested the efficacy of components of a chronic care model-based intervention versus usual care among 404 subjects having an ischemic stroke or transient ischemic attack within 90 days of enrollment and receiving care within the Los Angeles public healthcare system. Subjects had baseline systolic blood pressure (SBP) ≥120 mm Hg. The intervention included a nurse practitioner/physician assistant care manager, group clinics, self-management support, report cards, decision support, and ongoing care coordination. Outcomes were collected at 3, 8, and 12 months, analyzed as intention-to-treat, and used repeated-measures mixed-effects models. Change in SBP was the primary outcome. Low-density lipoprotein reduction, antithrombotic medication use, smoking cessation, and physical activity were secondary outcomes. Average age was 57 years; 18% were of black race; 69% were of Hispanic ethnicity. Mean baseline SBP was 150 mm Hg in both arms. SBP decreased to 17 mm Hg in the intervention arm and 14 mm Hg in the usual care arm; the between-arm difference was not significant (-3.6 mm Hg; 95% confidence interval, -9.2 to 2.2). Among secondary outcomes, the only significant difference was that persons in the intervention arm were more likely to lower their low-density lipoprotein <100 md/dL (2.0 odds ratio; 95% confidence interval, 1.1-3.5). CONCLUSIONS: This intervention did not improve SBP control beyond that attained in usual care among vulnerable stroke survivors. A community-centered component could strengthen the intervention impact. CLINICAL TRIAL REGISTRATION: URL: https://clinicaltrials.gov. Unique identifier: NCT00861081.


Assuntos
Serviços de Saúde Comunitária/métodos , Ataque Isquêmico Transitório/terapia , Assistência de Longa Duração/métodos , Prevenção Secundária/métodos , Acidente Vascular Cerebral/terapia , Sobreviventes , Populações Vulneráveis , Afro-Americanos , Idoso , Doença Crônica , Prestação Integrada de Cuidados de Saúde , Grupo com Ancestrais do Continente Europeu , Feminino , Nível de Saúde , Disparidades nos Níveis de Saúde , Disparidades em Assistência à Saúde/etnologia , Hispano-Americanos , Humanos , Ataque Isquêmico Transitório/diagnóstico , Ataque Isquêmico Transitório/etnologia , Ataque Isquêmico Transitório/fisiopatologia , Los Angeles/epidemiologia , Masculino , Pessoa de Meia-Idade , Equipe de Assistência ao Paciente , Setor Público , Recidiva , Medição de Risco , Fatores de Risco , Provedores de Redes de Segurança , Fatores Socioeconômicos , Acidente Vascular Cerebral/diagnóstico , Acidente Vascular Cerebral/etnologia , Acidente Vascular Cerebral/fisiopatologia , Fatores de Tempo , Resultado do Tratamento
7.
J Stroke Cerebrovasc Dis ; 26(12): 2806-2813, 2017 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-28823491

RESUMO

BACKGROUND: Stroke survivors have high rates of subsequent cardiovascular and recurrent cerebrovascular events, and mortality. While healthy lifestyle practices - including a diet rich in fruits and vegetables, limited alcohol intake, and regular physical activity - can mitigate these outcomes, few stroke survivors adhere to them. Minorities from socioeconomically disadvantaged communities who obtain care in safety-net health systems experience the most barriers to implementing healthy lifestyle changes after stroke. PURPOSE: To report the design of Healthy Eating and Lifestyle After Stroke (HEALS), a randomized controlled trial (RCT) was designed to test the feasibility of using a manualized, lifestyle management intervention in a safety-net setting to improve lifestyle practices among ethnically diverse individuals with stroke or transient ischemic attack (TIA). METHODS: Design: Pilot RCT. PARTICIPANTS: Inclusion criteria: 1) Adults (≥40 years) with ischemic stroke or TIA (≥ 90 days prior); 2) English- or Spanish-speaking. SETTING: Outpatient clinic, safety-net setting. INTERVENTION: Weekly two-hour small group sessions led by an occupational therapist for six weeks. The sessions focused on implementing nutrition, physical activity, and self-management strategies tailored to each participant's goals. MAIN OUTCOME MEASURES: Body mass index, diet, and physical activity. CONCLUSIONS: Recruitment for this study is complete. If the HEALS intervention study is feasible and effective, it will serve as a platform for a large-scale RCT that will investigate the efficacy and cost-effectiveness of life management interventions for racially and ethnically diverse, low-income individuals with a history of stroke or TIA who seek healthcare in the safety-net system.


Assuntos
Ataque Isquêmico Transitório/terapia , Comportamento de Redução do Risco , Autocuidado , Reabilitação do Acidente Vascular Cerebral/métodos , Acidente Vascular Cerebral/terapia , Idoso , Aconselhamento , Estudos de Viabilidade , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Ataque Isquêmico Transitório/etnologia , Ataque Isquêmico Transitório/mortalidade , Ataque Isquêmico Transitório/fisiopatologia , Los Angeles/epidemiologia , Masculino , Pessoa de Meia-Idade , Cooperação do Paciente , Educação de Pacientes como Assunto , Projetos Piloto , Fatores de Proteção , Recidiva , Projetos de Pesquisa , Fatores de Risco , Provedores de Redes de Segurança , Acidente Vascular Cerebral/etnologia , Acidente Vascular Cerebral/mortalidade , Acidente Vascular Cerebral/fisiopatologia , Reabilitação do Acidente Vascular Cerebral/efeitos adversos , Reabilitação do Acidente Vascular Cerebral/mortalidade , Fatores de Tempo , Resultado do Tratamento
8.
JMIR Res Protoc ; 6(5): e94, 2017 May 23.
Artigo em Inglês | MEDLINE | ID: mdl-28536094

RESUMO

BACKGROUND: Beta versions of health information technology tools are needed in service delivery models with health care and community partnerships to confirm the key components and to assess the performance of the tools and their impact on users. We developed a care management technology (CMT) for use by community health workers (CHWs) and care managers (CMs) working collaboratively to improve risk factor control among recent stroke survivors. The CMT was expected to enhance the efficiency and effectiveness of the CHW-CM team. OBJECTIVE: The primary objective was to describe the Secondary Stroke Prevention by Uniting Community and Chronic Care Model Teams Early to End Disparities (SUCCEED) CMT and investigate CM and CHW perceptions of the CMT's usefulness and challenges for team-based care management. METHODS: We conducted qualitative interviews with all users of the beta-version SUCCEED CMT, namely two CMs and three CHWs. They were asked to demonstrate and describe their perceptions of the CMT's ease of use and usefulness for completing predefined key care management activities. They were also probed about their general perceptions of the CMT's information quality, ease of use, usefulness, and impact on CM and CHW roles. Interview transcripts were coded using a priori codes. Coded excerpts were grouped into broader themes and then related in a conceptual model of how the CMT facilitated care management. We also conducted a survey with 14 patients to obtain their perspective on CHW tablet use during CHW-patient interactions. RESULTS: Care managers and community health workers expressed that the CMT helped them keep track of patient interactions and plan their work. It guided CMs in developing and sharing care plans with CHWs. For CHWs, the CMT enabled electronic collection of clinical assessment data, provided decision support, and provided remote access to patients' risk factor values. Long loading times and downtimes due to outages were the most significant challenges encountered. Additional issues included extensive use of free-text responses and manual data transfer from the electronic medical record. Despite these challenges, patients overall did not perceive the tablet as interfering with CHW-patient interactions. CONCLUSIONS: Our findings suggest useful functionalities of CMTs supporting health care and community partners in collaborative chronic care management. However, usability issues need to be addressed during the development process. The SUCCEED CMT is an initial step toward the development of effective health information technology tools to support collaborative, team-based models of care and will need to be modified as the evidence base grows. Future research should assess the CMT's effects on team performance.

9.
Epilepsia ; 58(5): 781-791, 2017 05.
Artigo em Inglês | MEDLINE | ID: mdl-28378439

RESUMO

OBJECTIVE: We aimed to compare long-term social outcomes in young adults with childhood-onset epilepsy (cases) with neurologically normal sibling controls. METHODS: Long-term social outcomes were assessed at the 15-year follow-up of the Connecticut Study of Epilepsy, a community-based prospective cohort study of children with newly diagnosed epilepsy. Young adults with childhood-onset epilepsy with complicated (abnormal neurologic exam findings, abnormal brain imaging with lesion referable to epilepsy, intellectual disability (ID; IQ < 60) or informative history of neurologic insults to which the occurrence of epilepsy might be attributed), and uncomplicated epilepsy presentations were compared to healthy sibling controls. Age, gender, and matched-pair adjusted generalized linear models stratified by complicated epilepsy and 5-year seizure-free status estimated adjusted odds ratios (aORs) and 95% confidence intervals [CIs] for each outcome. RESULTS: The 15-year follow-up included 361 individuals with epilepsy (59% of initial cases; N = 291 uncomplicated and N = 70 complicated epilepsy; mean age 22 years [standard deviation, SD 3.5]; mean epilepsy onset 6.2 years [SD 3.9]) and 173 controls. Social outcomes for cases with uncomplicated epilepsy with ≥5 years terminal remission were comparable to controls; cases with uncomplicated epilepsy <5 years seizure-free were more likely to be less productive (school/employment < 20 h/week) (aOR 3.63, 95% CI 1.83-7.20) and not to have a driver's license (aOR 6.25, 95% CI 2.85-13.72). Complicated cases with epilepsy <5 years seizure-free had worse outcomes across multiple domains; including not graduating high school (aOR 24.97, 95% CI 7.49-83.30), being un- or underemployed (<20 h/week) (aOR 11.06, 95% CI 4.44-27.57), being less productively engaged (aOR 15.71, 95% CI 6.88-35.88), and not living independently (aOR 10.24, 95% CI 3.98-26.36). Complicated cases without ID (N = 36) had worse outcomes with respect to productive engagement (aOR 6.02; 95% CI 2.48-14.58) compared to controls. Cases with complicated epilepsy were less likely to be driving compared to controls, irrespective of remission status or ID. SIGNIFICANCE: In individuals with uncomplicated childhood-onset epilepsy presentations and 5-year terminal remission, young adult social outcomes are comparable to those of sibling controls. Complicated epilepsy, notable for intellectual disability, and seizure remission status are important prognostic indicators for long-term young adult social outcomes in childhood-onset epilepsy.


Assuntos
Epilepsia/diagnóstico , Epilepsia/psicologia , Irmãos/psicologia , Atividades Cotidianas/classificação , Atividades Cotidianas/psicologia , Idade de Início , Encéfalo/patologia , Dano Encefálico Crônico/diagnóstico , Dano Encefálico Crônico/psicologia , Estudos de Casos e Controles , Criança , Estudos de Coortes , Connecticut , Avaliação da Deficiência , Epilepsia/complicações , Epilepsia/etiologia , Feminino , Seguimentos , Humanos , Deficiência Intelectual/diagnóstico , Deficiência Intelectual/psicologia , Imagem por Ressonância Magnética , Masculino , Exame Neurológico , Prognóstico , Estudos Prospectivos , Adulto Jovem
10.
BMC Neurol ; 17(1): 24, 2017 Feb 06.
Artigo em Inglês | MEDLINE | ID: mdl-28166784

RESUMO

BACKGROUND: Recurrent strokes are preventable through awareness and control of risk factors such as hypertension, and through lifestyle changes such as healthier diets, greater physical activity, and smoking cessation. However, vascular risk factor control is frequently poor among stroke survivors, particularly among socio-economically disadvantaged blacks, Latinos and other people of color. The Chronic Care Model (CCM) is an effective framework for multi-component interventions aimed at improving care processes and outcomes for individuals with chronic disease. In addition, community health workers (CHWs) have played an integral role in reducing health disparities; however, their effectiveness in reducing vascular risk among stroke survivors remains unknown. Our objectives are to develop, test, and assess the economic value of a CCM-based intervention using an Advanced Practice Clinician (APC)-CHW team to improve risk factor control after stroke in an under-resourced, racially/ethnically diverse population. METHODS/DESIGN: In this single-blind randomized controlled trial, 516 adults (≥40 years) with an ischemic stroke, transient ischemic attack or intracerebral hemorrhage within the prior 90 days are being enrolled at five sites within the Los Angeles County safety-net setting and randomized 1:1 to intervention vs usual care. Participants are excluded if they do not speak English, Spanish, Cantonese, Mandarin, or Korean or if they are unable to consent. The intervention includes a minimum of three clinic visits in the healthcare setting, three home visits, and Chronic Disease Self-Management Program group workshops in community venues. The primary outcome is blood pressure (BP) control (systolic BP <130 mmHg) at 1 year. Secondary outcomes include: (1) mean change in systolic BP; (2) control of other vascular risk factors including lipids and hemoglobin A1c, (3) inflammation (C reactive protein [CRP]), (4) medication adherence, (5) lifestyle factors (smoking, diet, and physical activity), (6) estimated relative reduction in risk for recurrent stroke or myocardial infarction (MI), and (7) cost-effectiveness of the intervention versus usual care. DISCUSSION: If this multi-component interdisciplinary intervention is shown to be effective in improving risk factor control after stroke, it may serve as a model that can be used internationally to reduce race/ethnic and socioeconomic disparities in stroke in resource-constrained settings. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT01763203 .


Assuntos
Hemorragia Cerebral/prevenção & controle , Serviços de Saúde Comunitária/métodos , Disparidades em Assistência à Saúde , Ataque Isquêmico Transitório/prevenção & controle , Provedores de Redes de Segurança/métodos , Prevenção Secundária/métodos , Acidente Vascular Cerebral/prevenção & controle , Adulto , Idoso , Idoso de 80 Anos ou mais , Humanos , Los Angeles , Pessoa de Meia-Idade , Fatores de Risco , Método Simples-Cego
11.
Patient Prefer Adherence ; 10: 2197-2207, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-27826186

RESUMO

BACKGROUND AND AIM: Adherence to treatment is a critical component of epilepsy management. This study examines whether addressing antiepileptic drug (AED) side effects at every visit is associated with increased patient-reported medication adherence. PATIENTS AND METHODS: This study identified 243 adults with epilepsy who were seen at two academic outpatient neurology settings and had at least two visits over a 3-year period. Demographic and clinical characteristics were abstracted. Evidence that AED side effects were addressed was measured through 1) phone interview (patient-reported) and 2) medical records abstraction (physician-documented). Medication adherence was assessed using the validated Morisky Medication Adherence Scale-4. Complete adherence was determined as answering "no" to all questions. RESULTS: Sixty-two (25%) patients completed the interviews. Participants and nonparticipants were comparable with respect to demographic and clinical characteristics; however, a smaller proportion of participants had a history of drug-resistant epilepsy than nonparticipants (17.7% vs 30.9%, P=0.04). Among the participants, evidence that AED side effects were addressed was present in 48 (77%) medical records and reported by 51 (82%) patients. Twenty-eight (45%) patients reported complete medication adherence. The most common reason for incomplete adherence was missed medication due to forgetfulness (n=31, 91%). There was no association between addressing AED side effects (neither physician-documented nor patient-reported) and complete medication adherence (P=0.22 and 0.20). DISCUSSION AND CONCLUSION: Among patients with epilepsy, addressing medication side effects at every visit does not appear to increase patient-reported medication adherence.

12.
Epilepsy Behav ; 62: 276-84, 2016 09.
Artigo em Inglês | MEDLINE | ID: mdl-27521720

RESUMO

OBJECTIVE: Children with medically refractory epilepsy stand to benefit from surgery and live a life free of seizures. However, a large proportion of potentially eligible children do not receive a timely referral for a surgical evaluation. We aimed to describe experiences during the arduous time before the referral and the parent-reported facilitators that helped them move forward through this slow time. METHODS: Individual semi-structured interviews with 37 parents of children who had previously undergone epilepsy surgery at UCLA (2006-2011) were recorded, transcribed, and systematically analyzed by two independent coders using thematic analysis. Clinical data were extracted from medical records. RESULTS: Parents, 41.3years of age on average, were mostly Caucasian, English-speaking, mothers, married, and employed. The mean age at surgery for children was 8.2years with a mean time from epilepsy onset to surgery of 5.4years. Parental decision-making was facilitated when parents eventually received a presurgical referral and navigated to a multidisciplinary team that they trusted to care for their child with medically refractory epilepsy. Four themes described the experiences that parents used to feel a sense of moving forward. The first theme, processing, involved working through feelings and was mostly done alone. The second theme, navigating the complex unknowns of the health-care system, was more active and purposeful. Processing co-occurred with navigating in a fluid intersection, the third theme, which was evidenced by deliberate actions. The fourth theme, facilitators, explained helpful ways of processing and navigating; parents utilized these mechanisms to turn vulnerable times following the distress of their child's diagnosis into an experience of productivity. SIGNIFICANCE: To limit parental distress and remediate the slow and arduous journey to multidisciplinary care at a comprehensive epilepsy center for a surgical evaluation, we suggest multi-pronged interventions to modify barriers associated with parents, providers, and health-care systems. Based on the facilitators that moved parents of our sample forward, we provide practical suggestions such as increased peer support, developing the role of patient navigators and communication strategies with parents before, during, and after referral to a comprehensive epilepsy center and presurgical evaluation.


Assuntos
Encéfalo/cirurgia , Tomada de Decisões , Epilepsia/cirurgia , Procedimentos Neurocirúrgicos , Pais , Encaminhamento e Consulta , Adolescente , Criança , Pré-Escolar , Comunicação , Feminino , Humanos , Masculino
13.
Epilepsy Behav ; 62: 90-6, 2016 09.
Artigo em Inglês | MEDLINE | ID: mdl-27450312

RESUMO

OBJECTIVE: The aim of this study was to compare physician encounter documentation with patient perceptions of quality of epilepsy care and examine the association between quality and patient assessment of provider communication. METHODS: We identified 505 adult patients with epilepsy aged 18years or older over a 3-year period in two large academic medical centers. We abstracted individual, clinical, and care measures from 2723 electronic clinical notes written by physicians. We then randomly selected 245 patients for a phone interview. We compared patient perceptions of care with the documented care for several established epilepsy quality measures. We also explored the association of patient's perception of provider communication with provider documentation of key encounter interventions. RESULTS: There were 88 patients (36%) who completed the interviews. Fifty-seven (24%) refused to participate, and 100 (40%) could not be contacted. Participants and nonparticipants were comparable in their demographic and clinical characteristics; however, participants were more often seen by epilepsy specialists than nonparticipants (75% vs. 61.9%, p<0.01). Quality scores based on patient perceptions differed from those determined by assessing the documentation in the medical record for several quality measures, e.g., documentation of side effects of antiseizure therapy (p=0.05), safety counseling (p<0.01), and counseling for women of childbearing potential with epilepsy (McNemar's p=0.03; intraclass correlation coefficient, ICC=0.07). There was a significant, positive association between patient-reported counseling during the encounter (e.g., personalized safety counseling) and patient-reported scores of provider communication (p=0.05). CONCLUSIONS: The association between the patient's recollection of counseling during the visit and his/her positive perception of the provider's communication skills highlights the importance of spending time counseling patients about their epilepsy and not just determining if seizures are controlled.


Assuntos
Epilepsia/tratamento farmacológico , Registros Médicos , Percepção , Relações Médico-Paciente , Qualidade da Assistência à Saúde , Adulto , Comunicação , Epilepsia/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Médicos , Adulto Jovem
14.
Neurology ; 86(22): 2056-62, 2016 05 31.
Artigo em Inglês | MEDLINE | ID: mdl-27060165

RESUMO

OBJECTIVE: To measure the extent and timing of physicians' documentation of communication with patients and families regarding limitations on life-sustaining interventions, in a population cohort of adults who died within 30 days after hospitalization for ischemic stroke. METHODS: We used the California Office of Statewide Health Planning and Development Patient Discharge Database to identify a retrospective cohort of adults with ischemic strokes at all California acute care hospitals from December 2006 to November 2007. Of 326 eligible hospitals, a representative sample of 39 was selected, stratified by stroke volume and mortality. Medical records of 981 admissions were abstracted, oversampled on mortality and tissue plasminogen activator receipt. Among 198 patients who died by 30 days postadmission, overall proportions and timing of documented preferences were calculated; factors associated with documentation were explored. RESULTS: Of the 198 decedents, mean age was 80 years, 78% were admitted from home, 19% had mild strokes, 11% received tissue plasminogen activator, and 42% died during the index hospitalization. Preferences about at least one life-sustaining intervention were recorded on 39% of patients: cardiopulmonary resuscitation 34%, mechanical ventilation 23%, nasogastric tube feeding 10%, and percutaneous enteral feeding 6%. Most discussions occurred within 5 days of death. Greater stroke severity was associated with increased in-hospital documentation of preferences (p < 0.05). CONCLUSIONS: Documented discussions about limitations on life-sustaining interventions during hospitalization were low, even though this cohort died within 30 days poststroke. Improving the documentation of preferences may be difficult given the 2015 Centers for Medicare and Medicaid 30-day stroke mortality hospital performance measure that is unadjusted for patient preferences regarding life-sustaining interventions.


Assuntos
Isquemia Encefálica/terapia , Cuidados para Prolongar a Vida , Registros Médicos , Preferência do Paciente , Ordens quanto à Conduta (Ética Médica) , Acidente Vascular Cerebral/terapia , Idoso de 80 Anos ou mais , Isquemia Encefálica/mortalidade , Isquemia Encefálica/psicologia , California , Comunicação , Documentação , Hospitalização , Humanos , Relações Médico-Paciente , Estudos Retrospectivos , Acidente Vascular Cerebral/mortalidade , Acidente Vascular Cerebral/psicologia
15.
Pediatrics ; 137(4)2016 04.
Artigo em Inglês | MEDLINE | ID: mdl-26983470

RESUMO

BACKGROUND: Adults with childhood-onset epilepsy experience poorer adult social outcomes than their peers. The relative roles of seizures over time versus learning and psychiatric problems are unclear. METHODS: We examined independent influences of psychiatric and learning disorders and of seizure course in 241 young adults (22-35 years old) with uncomplicated epilepsy in a longitudinal community-based cohort study. Social outcomes were ascertained throughout the study. A history of psychiatric and learning problems was ascertained ∼9 years after study entry. Seizure course was: "Excellent," no seizures after the first year, in complete remission at last contact (N = 95, 39%); "Good," seizures occurred 1 to 5 years after diagnosis, in complete remission at last contact (N = 56, 23%); "Fluctuating," more complicated trajectories, but never pharmacoresistant (N = 70, 29%); "Pharmacoresistant," long-term pharmacoresistant (N = 20, 8%). Multiple logistic regression was used to identify contributors to each social outcome. RESULTS: Better seizure course predicted college completion, being either employed or pursuing a degree, and driving, but was not substantially associated with other social outcomes. Poorer seizure course was associated with a greater likelihood of having offspring, particularly in women without partners. Learning problems, psychiatric disorders, or both negatively influenced all but 2 of the social outcomes. CONCLUSIONS: In young adults with uncomplicated epilepsy, the course of seizures contributed primarily to education, employment, and driving. A history of learning problems and psychiatric disorders adversely influenced most adult outcomes. These findings identify potential reasons for vocational and social difficulties encountered by young adults with childhood epilepsy and areas to target for counseling and transition planning.


Assuntos
Condução de Veículo , Escolaridade , Emprego , Epilepsia , Adulto , Idade de Início , Criança , Estudos de Coortes , Epilepsia/psicologia , Feminino , Humanos , Masculino , Convulsões , Adulto Jovem
16.
Muscle Nerve ; 53(2): 183-90, 2016 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-26044513

RESUMO

INTRODUCTION: The Myotonic Dystrophy Health Index (MDHI) is a disease-specific patient-reported outcome measure. Here, we examine the associations between the MDHI and other measures of disease burden in a cohort of individuals with myotonic dystrophy type-1 (DM1). METHODS: We conducted a cross-sectional study of 70 patients with DM1. We examined the associations between MDHI total and subscale scores and scores from other clinical tests. Participants completed assessments of strength, myotonia, motor and respiratory function, ambulation, and body composition. Participants also provided blood samples, underwent physician evaluations, and completed other patient-reported outcome measures. RESULTS: MDHI total and subscale scores were strongly associated with muscle strength, myotonia, motor function, and other clinical measures. CONCLUSIONS: Patient-reported health status, as measured by the MDHI, is associated with alternative measures of clinical health. These results support the use of the MDHI as a valid tool to measure disease burden in DM1 patients.


Assuntos
Distrofia Miotônica/diagnóstico , Distrofia Miotônica/fisiopatologia , Índice de Gravidade de Doença , Absorciometria de Fóton , Adulto , Idoso , Creatina Quinase/metabolismo , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Força Muscular/fisiologia , Exame Neurológico , Estatística como Assunto , Adulto Jovem
17.
BMC Neurol ; 15: 258, 2015 Dec 15.
Artigo em Inglês | MEDLINE | ID: mdl-26670300

RESUMO

BACKGROUND: Parkinson's disease, the second most common neurodegenerative disease, is diagnostically defined by motor impairments, but also includes often under-recognized impairments in cognition, mood, sleep, and the autonomic nervous system. These problems can severely affect individuals' quality of life. In our prior research, we have developed indicators to measure the quality of care delivered to patients with Parkinson's disease, and we identified gaps in delivering evidence-based treatments for this population. Effective strategies to close these gaps are needed to improve patient quality of life. METHODS/DESIGN: Building on prior research we developed a multi-faceted proactive implementation program called Care Coordination for Health Promotion and Activities in Parkinson's Disease (CHAPS). To be eligible, patients had to have at least two visits with a primary diagnosis of idiopathic Parkinson's disease (ICD-9 code: 332.0) at one of five Veterans Affairs Medical Centers in the southwestern United States from 2010 to 2014. The program consists of telephone assessments, evidence-based protocols, and tools to enhance patient self-management, care planning, and coordination of care across providers, including an electronic database to support and track coordination of care. Our mixed-methods study employs a randomized, controlled trial design to test whether the CHAPS intervention improves performance in 38 quality measures among an analytic sample of 346 patients. The 38 quality measures are categorized into overarching areas of communication, education, and continuity; regulatory reporting; diagnosis; periodic assessment; medication use; management of motor and non-motor symptoms; use of non-pharmacological approaches and therapies; palliative care; and health maintenance. Secondary outcomes are patient health-related quality of life, self-efficacy, and perceptions of care quality. We are also evaluating the extent of the CHAPS Program implementation and measuring program costs and impacts on health services utilization, in order to perform a analysis of the CHAPS program from the perspective of the Veterans Health Administration (VA). Outcomes are assessed by interviewer-administered surveys collected at baseline and at 6, 12, and 18 months, and by medical record chart abstractions. Analyses will be intention-to-treat. DISCUSSION: The CHAPS Program is poised for dissemination within the VA National Parkinson's Disease Research, Education, and Clinical Center Consortium if demonstrated efficacious. TRIAL REGISTRATION: ClinicalTrials.gov NCT01532986; registered on January 13, 2012.


Assuntos
Protocolos Clínicos , Gerenciamento Clínico , Promoção da Saúde/métodos , Doença de Parkinson/reabilitação , Qualidade da Assistência à Saúde , Adulto , Humanos , Estudos Multicêntricos como Assunto , Doença de Parkinson/diagnóstico
18.
Neurology ; 85(24): 2136-46, 2015 Dec 15.
Artigo em Inglês | MEDLINE | ID: mdl-26581301

RESUMO

OBJECTIVE: To determine the frequency and relative importance of the most life-affecting symptoms in myotonic dystrophy type 2 (DM2) and to identify the factors that have the strongest association with these symptoms. METHODS: We conducted a cross-sectional study of adult patients with DM2 from a National Registry of DM2 Patients to assess the prevalence and relative importance of 310 symptoms and 21 symptomatic themes. Participant responses were compared by age categories, sex, educational attainment, employment status, and duration of symptoms. RESULTS: The symptomatic themes with the highest prevalence in DM2 were the inability to do activities (94.4%), limitations with mobility or walking (89.2%), hip, thigh, or knee weakness (89.2%), fatigue (89.2%), and myotonia (82.6%). Participants identified the inability to do activities and fatigue as the symptomatic themes that have the greatest overall effect on their lives. Unemployment, a longer duration of symptoms, and less education were associated with a higher average prevalence of all symptomatic themes (p < 0.01). Unemployment, a longer duration of symptoms, sex, and increased age were associated with a higher average effect of all symptomatic themes among patients with DM2 (p < 0.01). CONCLUSIONS: The lives of patients with DM2 are affected by a variety of symptoms. These symptoms have different levels of significance and prevalence in this population and vary across DM2 subgroups in different demographic categories.


Assuntos
Distrofia Miotônica/complicações , Distrofia Miotônica/diagnóstico , Sistema de Registros , Autorrelato , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Fadiga/diagnóstico , Fadiga/etiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Limitação da Mobilidade , Perfil de Impacto da Doença , Transtornos do Sono-Vigília/diagnóstico , Transtornos do Sono-Vigília/etiologia
19.
Neuroepidemiology ; 45(3): 221-9, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26505615

RESUMO

As a scientific field of study, neuroepidemiology encompasses more than just the descriptive study of the frequency, distribution, determinants and outcomes of neurologic diseases in populations. It also includes experimental aspects that span the full spectrum of clinical and population science research. As such, neuroepidemiology has a strong potential to inform implementation research for global stroke prevention and treatment. This review begins with an overview of the progress that has been made in descriptive and experimental neuroepidemiology over the past quarter century with emphasis on standards for evidence generation, critical appraisal of that evidence and impact on clinical and public health practice at the national, regional and global levels. Specific advances made in high-income countries as well as in low- and middle-income countries are presented. Gaps in implementation as well as evidence gaps in stroke research, stroke burden, clinical outcomes and disparities between developed and developing countries are then described. The continuing need for high quality neuroepidemiologic data in low- and middle-income countries is highlighted. Additionally, persisting disparities in stroke burden and care by sex, race, ethnicity, income and socioeconomic status are discussed. The crucial role that national stroke registries have played in neuroepidemiologic research is also addressed. Opportunities presented by new directions in comparative effectiveness and implementation research are discussed as avenues for turning neuroepidemiological insights into action to maximize health impact and to guide further biomedical research on neurological diseases.


Assuntos
Pesquisa Biomédica , Saúde Global , Acidente Vascular Cerebral/epidemiologia , Acidente Vascular Cerebral/terapia , Humanos , Internacionalidade , Acidente Vascular Cerebral/prevenção & controle
20.
Epilepsy Res ; 117: 35-41, 2015 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-26370916

RESUMO

OBJECTIVE: We assessed the relationship between adherence to epilepsy quality measures (EQM) and seizure control over 2-3 years in a retrospective cohort study. METHODS: 6150 patients were identified at two large academic medical centers with a primary or secondary diagnosis of epilepsy, were 18-85 years old and seen in outpatient general neurology or epilepsy units between June 2011 and May 2014. Patients were included if: their initial visit was between June 2011 and June 2012, treatment was with ≥1 anti-seizure drug, there was ≥1 visit per year during the timeframe, and seizure frequency was documented at initial and final visits, yielding 162 patients/1055 visits from which socio-demographic, clinical and care quality data were abstracted. Quality care was assessed as (1) percent adherence to up to 8 eligible EQM, and (2) defect-free care (DFC: adherence to all eligible EQM). Seizure control (SC) was defined as ≥50% reduction in average seizures/month between initial and final visits. Chi-square and t-test compared care quality with seizure control. Logistic regression was used to assess the relationships between SC, quality of care and subspecialist involvement. RESULTS: Care quality, reflected by documentation of seizure frequency, addressing therapeutic interventions, and referral to a comprehensive epilepsy center, all exceeded 80% adherence. Care quality as reflected by documentation of seizure type, etiology or syndrome; assessment of side effects, counseling about epilepsy safety and women's issues, and screening for psychiatric disorders ranged from 40 to 57%. Mean EQM adherence across all applicable measures was associated with greater seizure control (p=0.0098). DFC was low (=8%) and did not covary with seizure control (p=0.55). The SC and non-SC groups only differed on epilepsy etiology (p=0.04). Exploratory analysis showed that mean quality scores are associated with seizure control (OR=4.9 [1.3-18.5], p=0.017) while controlling for the effect of subspecialty involvement as a possible confounding variable. CONCLUSIONS: Average quality of care but not defect-free care was associated with seizure control in this retrospective cohort.


Assuntos
Epilepsia/diagnóstico , Epilepsia/terapia , Fidelidade a Diretrizes/normas , Neurologia/normas , Guias de Prática Clínica como Assunto , Qualidade da Assistência à Saúde/normas , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Adulto Jovem
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