Shelley Stoll

Policy and system change and community coalitions: outcomes from allies against asthma.

OBJECTIVES We assessed policy and system changes and health outcomes produced by the Allies Against Asthma program, a 5-year collaborative effort by 7 community coalitions to address childhood asthma. We also explored associations between community engagement and outcomes. METHODS We interviewed a sample of 1477 parents of children with asthma in coalition target areas and comparison areas at baseline and 1 year to assess quality-of-life and symptom changes. An extensive tracking and documentation procedure and a survey of 284 participating individuals and organizations were used to ascertain policy and system changes and community engagement levels. RESULTS A total of 89 policy and system changes were achieved, ranging from changes in interinstitutional and intrainstitutional practices to statewide legislation. Allies children experienced fewer daytime (P = .008) and nighttime (P = .004) asthma symptoms than comparison children. In addition, Allies parents felt less helpless, frightened, and angry (P = .01) about their childs asthma. Type of community engagement was associated with number of policy and system changes. CONCLUSIONS Community coalitions can successfully achieve asthma policy and system changes and improve health outcomes. Increased core and ongoing community stakeholder participation rather than a higher overall number of participants was associated with more change.

The Prevention Research Centers’ Managing Epilepsy Well Network

The Managing Epilepsy Well (MEW) Network was created in 2007 by the Centers for Disease Control and Preventions (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 Networks 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 Networks role in the future development and dissemination of evidence-based epilepsy self-management programs.

Expanding the Efficacy of Project UPLIFT: Distance Delivery of Mindfulness-based Depression Prevention to People with Epilepsy

OBJECTIVE Depression affects about 16% of the U.S. population over a lifetime. People with chronic diseases have especially high rates of comorbid depression; 32% to 48% of people with epilepsy experience depression. This study evaluated the efficacy of a mindfulness-based cognitive therapy intervention for preventing major depressive disorder (MDD) episodes in people with epilepsy. METHOD Participants (n = 128) were adults from Georgia, Michigan, Texas, and Washington with epilepsy and mild/moderate depressive symptoms. The 8-session weekly Project UPLIFT intervention, based on mindfulness-based cognitive therapy, was group-delivered via Web or telephone. Using a randomized, controlled crossover design, participants were assigned to Project UPLIFT or a treatment-as-usual (TAU) waitlist and assessed at baseline, and after intervening in the intervention group (∼10 weeks) and in the TAU group (∼20 weeks). Assessments included valid self-report measures of depression and MDD, knowledge/skills, and satisfaction with life. RESULTS The incidence of MDD episodes (new or relapse) from baseline to interim assessment was significantly lower in the intervention condition (0.0%) than in TAU (10.7%). Depressive symptoms decreased significantly more in the intervention condition than in TAU; Web and telephone did not differ. Change in knowledge/skills mediated the effect, which persisted over the 10 weeks of follow-up. Knowledge/skills and life satisfaction increased significantly more in the intervention condition than in TAU. CONCLUSIONS Distance delivery of group mindfulness-based cognitive therapy can prevent episodes of MDD, reduce symptoms of depression, and increase life satisfaction in people with epilepsy. This intervention is easily modified for persons with other chronic diseases and other disparity populations. (PsycINFO Database Record

Characteristics of Successful Asthma Programs

Objective. We identified characteristics of interventions associated with positive asthma outcomes to understand how programs can be improved. Methods. We identified asthma interventions from the peer-reviewed literature or through a nomination process for unpublished programs. Initially, we identified 532 interventions. Of those, 223 met our eligibility criteria (e.g., focus on asthma, completed an evaluation, and demonstrated at least one asthma-related health outcome) and provided information on program components and processes, administration, evaluation, and findings through telephone interviews, program documents, and published reports. We analyzed bivariate relationships between programmatic factors and outcomes using Chi-square statistics, Fishers exact tests, and unconditional logistic regression. We confirmed findings for all programs by analyzing the subset with published results in peer-reviewed journals. Results. Our findings indicated that programs were more likely to report a positive impact on health outcomes if they (7) were community based, (2) engaged the participation of community-based organizations, (3) provided program components in a clinical setting, (4) provided asthma training to health-care providers, (5) collaborated with other organizations and institutions and with government agencies, (6) designed a program for a specific racial/ethnic group, (7) tailored content or delivery based on individual health or educational needs, and (8) conducted environmental assessments and tailored interventions based on these assessments. Conclusions. Positive asthma outcomes were associated with specific program characteristics: being community centered, clinically connected, and continuously collaborative. Program developers and implementers who build these characteristics into their interventions will be more likely to realize desired asthma outcomes.

Improvements in health care use associated with community coalitions: Long-term results of the allies against asthma initiative

OBJECTIVES We assessed changes in asthma-related health care use by low-income children in communities across the country where 6 Allies Against Asthma coalitions (Hampton Roads, VA; Washington, DC; Milwaukee, WI; King County/Seattle, WA; Long Beach, CA; and Philadelphia, PA) mobilized stakeholders to bring about policy changes conducive to asthma control. METHODS Allies intervention zip codes were matched with comparison communities by median household income, asthma prevalence, total population size, and race/ethnicity. Five years of data provided by the Center for Medicare and Medicaid Services on hospitalizations, emergency department (ED) use, and physician urgent care visits for children were analyzed. Intervention and comparison sites were compared with a stratified recurrent event analysis using a Cox proportional hazard model. RESULTS In most of the assessment years, children in Allies communities were significantly less likely (P < .04) to have an asthma-related hospitalization, ED visit, or urgent care visit than children in comparison communities. During the entire period, children in Allies communities were significantly less likely (P < .02) to have such health care use. CONCLUSIONS Mobilizing a diverse group of stakeholders, and focusing on policy and system changes generated significant reductions in health care use for asthma in vulnerable communities.

Fostering epilepsy self management: The perspectives of professionals

Epilepsy clinical, academic, and human service professionals (N = 101) were surveyed regarding the challenges people with epilepsy face managing their condition. 30% of the respondents had personal experience with epilepsy. Interviews were transcribed and coded into themes. Response differences by profession and personal experience were examined using chi-squared tests. The two greatest challenges reported most frequently for people with epilepsy were finding high quality health care and managing psychological and emotional effects. The two most important epilepsy outcomes were seizure control and quality of life. The two greatest challenges facing clinicians were too little time with patients and limited clinical focus. The two main weaknesses in the field were insufficient research and narrow approaches to addressing epilepsy. Significant differences in responses across professions were evident as were differences according to personal experience with epilepsy. Few clinicians cited quality of care as a major challenge (p<0.0001) compared to other professions. Few respondents with personal experience with epilepsy cited stigma as a challenge (p = 0.006).

Development of the Adult Epilepsy Self-Management Measurement Instrument (AESMMI).

Epilepsy self-management is the total sum of steps that people perform to maximize seizure control, to minimize the impact of having a seizure disorder, and to maximize quality of life. As part of a phased approach to instrument development, we conducted descriptive analyses of data from epilepsy self-management items covering 10 domains of self-management gathered from 422 adults with epilepsy from multiple study sites. Participants most frequently reported performing sets of behaviors related to managing treatment and stigma, information seeking, managing symptoms, and communicating with providers. Behaviors reported with lower frequency were related to seeking social support and engaging in wellness behaviors. Significant differences for the domains were found for income, gender, and education levels but not for other different demographic variables. A subsequent analytic phase, reported in a companion article, will use factor analysis to identify and validate the subscale structure of the domains.

Managing information well: Toward an ontology-driven informatics platform for data sharing and secondary use in epilepsy self-management research centers.

Epilepsy is a chronic neurological condition that requires active self-management to reduce personal and population burden. The Managing Epilepsy Well Network, funded by the US Centers for Disease Control and Prevention, conducts research on epilepsy self-management. There is an urgent need to develop an integrated informatics platform to maximize the secondary use of existing Managing Epilepsy Well Network data. We have implemented multiple steps to develop an informatics platform, including: (a) a survey of existing outcome data, (b) identification of common data elements, and (c) an integrated database using an epilepsy domain ontology to reconcile data heterogeneity. The informatics platform enables assessment of epilepsy self-management samples by site and in aggregate to support data interpretations for clinical care and ongoing epilepsy self-management research. The Managing Epilepsy Well informatics platform is expected to help advance epilepsy self-management, improve health outcomes, and has potential application in other thematic research networks.

Factor analyses of an Adult Epilepsy Self-Management Measurement Instrument (AESMMI).

The purpose of this study was to test the psychometric properties of an enhanced Adult Epilepsy Self-Management Measurement Instrument (AESMMI). An instrument of 113 items, covering 10 a priori self-management domains, was generated through a multiphase process, based on a review of the literature, validated epilepsy and other chronic condition self-management scales and expert input. Reliability and exploratory factor analyses were conducted on data collected from 422 adults with epilepsy. The instrument was reduced to 65 items, converging on 11 factors: Health-care Communication, Coping, Treatment Management, Seizure Tracking, Social Support, Seizure Response, Wellness, Medication Adherence, Safety, Stress Management, and Proactivity. Exploratory factors supported the construct validity for 6 a priori domains, albeit with significant changes in the retained items or in their scope and 3 new factors. One a priori domain was split in 2 subscales pertaining to treatment. The configuration of the 11 factors provides additional insight into epilepsy self-management behaviors. Internal consistency reliability of the 65-item instrument was high (α=.935). Correlations with independent measures of health status, quality of life, depression, seizure severity, and life impact of epilepsy further validated the instrument. This instrument shows potential for use in research and clinical settings and for assessing intervention outcomes and self-management behaviors in adults with epilepsy.

Pediatric Asthma Care Coordination in Underserved Communities: A Quasiexperimental Study

OBJECTIVES To assess the effect of care coordination on asthma outcomes among children in underserved urban communities. METHODS We enrolled children, most of whom had very poorly or not well-controlled asthma, in medical-social care coordination programs in Los Angeles, California; Chicago, Illinois; Philadelphia, Pennsylvania; and San Juan, Puerto Rico in 2011 to 2014. Participants (n = 805; mean age = 7 years) were 60% male, 50% African American, and 42% Latino. We assessed asthma symptoms and health care utilization via parent interview at baseline and 12 months. To prevent overestimation of intervention effects, we constructed a comparison group using bootstrap resampling of matched control cases from previous pediatric asthma trials. RESULTS At follow-up, intervention participants had 2.2 fewer symptom days per month (SD = 0.3; P < .01) and 1.9 fewer symptom nights per month (SD = 0.35; P < .01) than did the comparison group. The relative risk in the past year associated with the intervention was 0.63 (95% confidence interval [CI] = 0.45, 0.89) for an emergency department visit and 0.69 (95% CI = 0.47, 1.01) for hospitalization. CONCLUSIONS Care coordination may improve pediatric asthma symptom control and reduce emergency department visits. POLICY IMPLICATIONS Expanding third-party reimbursement for care coordination services may help reduce pediatric asthma disparities.