Morbidity Due to Disparity in Pediatric Electroconvulsive Therapy.

Dr. Miller and colleagues recently submitted a Letter to the Editor discussing current state laws that result in disparity of electroconvulsive therapy (ECT) availability.1 In this current letter, we present a case of treatment-resistant childhood-onset schizophrenia (COS), with morbidity due to limited access to ECT. The patient and his family presented from Kentucky to Tennessee, despite less legislative regulation in the former. The patient's family provided informed consent for this report to be published.

Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute.

Charged with ensuring that research produces useful evidence to inform health decisions, the Patient-Centered Outcomes Research Institute (PCORI) requires investigators to engage patients and other health care stakeholders, such as clinicians and payers, in the research process. Many PCORI studies result in articles published in peer-reviewed journals that detail research findings and engagement's role in research. To inform practices for engaging patients and others as research partners, we analyzed 126 articles that described engagement approaches and contributions to research. PCORI projects engaged patients and others as consultants and collaborators in determining the study design, selecting study outcomes, tailoring interventions to meet patients' needs and preferences, and enrolling participants. Many articles reported that engagement provided valuable contributions to research feasibility, acceptability, rigor, and relevance, while a few noted trade-offs of engagement. The findings suggest that engagement can support more relevant research through better alignment with patients' and clinicians' real-world needs and concerns.

Knowledge of and Attitudes Toward Evidence-Based Guidelines for and Against Clinical Preventive Services: Results from a National Survey.

POLICY POINTS: Both the underuse and overuse of clinical preventive services relative to evidence-based guidelines are a public health concern. Informed consumers are an important foundation of many components of the Affordable Care Act, including coverage mandates for proven clinical preventive services recommended by the US Preventive Services Task Force. Across sociodemographic groups, however, knowledge of and positive attitudes toward evidence-based guidelines for preventive care are extremely low. Given the demonstrated low levels of consumers' knowledge of and trust in guidelines, coupled with their strong preference for involvement in preventive care decisions, better education and decision-making support for evidence-based preventive services are greatly needed. CONTEXT: Both the underuse and overuse of clinical preventive services are a serious public health problem. The goal of our study was to produce population-based national data that could assist in the design of communication strategies to increase knowledge of and positive attitudes toward evidence-based guidelines for clinical preventive services (including the US Preventive Services Task Force, USPSTF) and to reduce uncertainty among patients when guidelines change or are controversial. METHODS: In late 2013 we implemented an Internet-based survey of a nationally representative sample of 2,529 adults via KnowledgePanel, a probability-based survey panel of approximately 60,000 adults, statistically representative of the US noninstitutionalized population. African Americans, Hispanics, and those with less than a high school education were oversampled. We then conducted descriptive statistics and multivariable logistic regression analysis to identify the prevalence of and sociodemographic characteristics associated with key knowledge and attitudinal variables. FINDINGS: While 36.4% of adults reported knowing that the Affordable Care Act requires insurance companies to cover proven preventive services without cost sharing, only 7.7% had heard of the USPSTF. Approximately 1 in 3 (32.6%) reported trusting that a government task force would make fair guidelines for preventive services, and 38.2% believed that the government uses guidelines to ration health care. Most of the respondents endorsed the notion that research/scientific evidence and expert medical opinion are important for the creation of guidelines and that clinicians should follow guidelines based on evidence. But when presented with patient vignettes in which a physician made a guideline-based recommendation against a cancer-screening test, less than 10% believed that this recommendation alone, without further dialogue and/or the patient's own research, was sufficient to make such a decision. CONCLUSIONS: Given these demonstrated low levels of knowledge and mistrust regarding guidelines, coupled with a strong preference for shared decision making, better consumer education and decision supports for evidence-based guidelines for clinical preventive services are greatly needed.