Healthcare Reform in Latino Rhode Island: Perspectives of Spanish speakers and Insurance Navigators

Latinos have the highest uninsurance rates of any ethnic or racial group in the US despite recent health insurance expansion reform. In addition to immigration and language barriers, health literacy and attitudes may impact coverage disparities. Focus groups with Spanish-speaking community members and semi-structured interviews with health insurance navigators were conducted to explore knowledge, awareness, and attitudes towards healthcare reform among Latinos in Rhode Island. Sessions were audio recorded, transcribed, and analyzed employing standard qualitative methods. Thirty-two focus group participants and six navigators were enrolled in the study. Spanish-speaking participants demonstrated limited knowledge of the cost implications of the Medicaid Expansion and of the role of health insurance exchanges. Common misconceptions included that insurance costs would increase regardless of income, that enrollment would compromise green card and citizenship applications, that documented non-permanent residents would be ineligible for subsidies, and that reform benefits would apply to undocumented workers. Our findings suggest that local initiatives and providers should target Latinos in a culturally sensitive manner to increase literacy regarding insurance eligibility, affordability, points of access as well as to address misconceptions related to insurance eligibility for documented immigrants

Complement Activation in Patients With Probable Systemic Lupus Erythematosus and Ability to Predict Progression to American College of Rheumatology-Classified Systemic Lupus Erythematosus.

ObjectiveTo evaluate the frequency of cell-bound complement activation products (CB-CAPs) as a marker of complement activation in patients with suspected systemic lupus erythematosus (SLE) and the usefulness of this biomarker as a predictor of the evolution of probable SLE into SLE as classified by the American College of Rheumatology (ACR) criteria.MethodsPatients in whom SLE was suspected by lupus experts and who fulfilled 3 ACR classification criteria for SLE (probable SLE) were enrolled, along with patients with established SLE as classified by both the ACR and the Systemic Lupus International Collaborating Clinics (SLICC) criteria, patients with primary Sjögren's syndrome (SS), and patients with other rheumatic diseases. Individual CB-CAPs were measured by flow cytometry, and positivity rates were compared to those of commonly assessed biomarkers, including serum complement proteins (C3 and C4) and autoantibodies. The frequency of a positive multianalyte assay panel (MAP), which includes CB-CAPs, was also evaluated. Probable SLE cases were followed up prospectively.ResultsThe 92 patients with probable SLE were diagnosed more recently than the 53 patients with established SLE, and their use of antirheumatic medications was lower. At the enrollment visit, more patients with probable SLE were positive for CB-CAPs (28%) or MAP (40%) than had low complement levels (9%) (P = 0.0001 for each). In probable SLE, MAP scores of >0.8 at enrollment predicted fulfillment of a fourth ACR criterion within 18 months (hazard ratio 3.11, P < 0.01).ConclusionComplement activation occurs in some patients with probable SLE and can be detected with higher frequency by evaluating CB-CAPs and MAP than by assessing traditional serum complement protein levels. A MAP score above 0.8 predicts transition to classifiable SLE according to ACR criteria

The study design and rationale of the randomized controlled trial: translating COPD guidelines into primary care practice

Background: Chronic obstructive pulmonary disease (COPD) is a progressive, debilitating disease associated with significant clinical burden and is estimated to affect 15 million individuals in the US. Although a large number of individuals are diagnosed with COPD, many individuals still remain undiagnosed due to the slow progression of the disorder and lack of recognition of early symptoms. Not only is there under-diagnosis but there is also evidence of sub-optimal evidence-based treatment of those who have COPD. Despite the development of international COPD guidelines, many primary care physicians who care for the majority of patients with COPD are not translating this evidence into effective clinical practice. Method/Design This paper describes the design and rationale for a randomized, cluster design trial (RCT) aimed at translating the COPD evidence-based guidelines into clinical care in primary care practices. During Phase 1, a needs assessment evaluated barriers and facilitators to implementation of COPD guidelines into clinical practice through focus groups of primary care patients and providers. Using formative evaluation and feedback from focus groups, three tools were developed. These include a computerized patient activation tool (an interactive iPad with wireless data transfer to the spirometer); a web-based COPD guideline tool to be used by primary care providers as a decision support tool; and a COPD patient education toolkit to be used by the practice team. During phase II, an RCT will be performed with one year of intervention within 30 primary care practices. The effectiveness of the materials developed in Phase I are being tested in Phase II regarding physician performance of COPD guideline implementation and the improvement in the clinically relevant outcomes (appropriate diagnosis and management of COPD) compared to usual care. We will also examine the use of a patient activation tool - ‘MyLungAge’ - to prompt patients at risk for or who have COPD to request spirometry confirmation and to request support for smoking cessation if a smoker. Discussion Using a multi-modal intervention of patient activation and a technology-supported health care provider team, we are testing the effectiveness of this intervention in activating patients and improving physician performance around COPD guideline implementation. Trial registration ClinicalTrials.gov, NCT0123756

Effects of adding a new PCMH block rotation and resident team to existing longitudinal training within a certified PCMH: primary care residents’ attitudes, knowledge, and experience

Background: Although the patient-centered medical home (PCMH) model is considered important for the future of primary care in the USA, it remains unclear how best to prepare trainees for PCMH practice and leadership. Following a baseline study, the authors added a new required PCMH block rotation and resident team to an existing longitudinal PCMH immersion and didactic curriculum within a Level 3-certified PCMH, aiming for “enhanced situated learning”. All 39 residents enrolled in a USA family medicine residency program during the first year of curricular implementation completed this new 4-week rotation. This study examines the effects of this rotation after 1 year. Methods: A total of 39 intervention and 13 comparison residents were eligible participants. This multimethod study included: 1) individual interviews of postgraduate year (PGY) 3 intervention vs PGY3 comparison residents, assessing residents’ PCMH attitudes, knowledge, and clinical experience, and 2) routine rotation evaluations. Interviews were audiorecorded, transcribed, and analyzed using immersion/crystallization. Rotation evaluations were analyzed using descriptive statistics and qualitative analysis of free text responses. Results: Authors analyzed 23 interviews (88%) and 26 rotation evaluations (67%). Intervention PGY3s’ interviews revealed more nuanced understanding of PCMH concepts and more experience with system-level PCMH tasks than those of comparison PGY3s. More intervention PGY3s rated themselves “extremely prepared” to implement PCMH than comparison PGY3s; however, most self-rated “somewhat prepared”. Their reflections demonstrated deeper understanding of PCMH implementation and challenges than comparison PGY3s but inadequate experience to directly see the results of successful solutions. Rotation evaluations from PGY1, PGY2, and PGY3s revealed strengths and several areas for improvement. Conclusion: Adding one 4-week block rotation to existing longitudinal training appears to improve residents’ PCMH knowledge, skills, and experience from “basic” to “intermediate”. However, this training level appears inadequate for PCMH leadership or for teaching junior learners. Further study is needed to determine the optimum training for different settings

Physician communication styles in initial consultations for hematological cancer

Objective To characterize practices in subspecialist physicians’ communication styles, and their potential effects on shared decision-making, in second-opinion consultations. Methods Theme-oriented discourse analysis of 20 second-opinion consultations with subspecialist hematologist-oncologists. Results Physicians frequently “broadcasted” information about the disease, treatment options, relevant research, and prognostic information in extended, often-uninterrupted monologues. Their communicative styles had one of two implications: conveying options without offering specific recommendations, or recommending one without incorporating patients’ goals and values into the decision. Some physicians, however, used techniques that encouraged patient participation. Conclusions Broadcasting may be a suboptimal method of conveying complex treatment information in order to support shared decision-making. Interventions could teach techniques that encourage patient participation. Practice Implications Techniques such as open-ended questions, affirmations of patients’ expressions, and pauses to check for patient understanding can mitigate the effects of broadcasting and could be used to promote shared decision-making in information-dense subspecialist consultations.Other Research Uni

Mutations in SLC20A2 are a major cause of familial idiopathic basal ganglia calcification

Familial idiopathic basal ganglia calcification (IBGC) or Fahr's disease is a rare neurodegenerative disorder characterized by calcium deposits in the basal ganglia and other brain regions, which is associated with neuropsychiatric and motor symptoms. Familial IBGC is genetically heterogeneous and typically transmitted in an autosomal dominant fashion. We performed a mutational analysis of SLC20A2, the first gene found to cause IBGC, to assess its genetic contribution to familial IBGC. We recruited 218 subjects from 29 IBGC-affected families of varied ancestry and collected medical history, neurological exam, and head CT scans to characterize each patient's disease status. We screened our patient cohort for mutations in SLC20A2. Twelve novel (nonsense, deletions, missense, and splice site) potentially pathogenic variants, one synonymous variant, and one previously reported mutation were identified in 13 families. Variants predicted to be deleterious cosegregated with disease in five families. Three families showed nonsegregation with clinical disease of such variants, but retrospective review of clinical and neuroimaging data strongly suggested previous misclassification. Overall, mutations in SLC20A2 account for as many as 41 % of our familial IBGC cases. Our screen in a large series expands the catalog of SLC20A2 mutations identified to date and demonstrates that mutations in SLC20A2 are a major cause of familial IBGC. Non-perfect segregation patterns of predicted deleterious variants highlight the challenges of phenotypic assessment in this condition with highly variable clinical presentation

Dopamine signaling enriched striatal gene set predicts striatal dopamine synthesis and physiological activity in vivo

The polygenic architecture of schizophrenia implicates several molecular pathways involved in synaptic function. However, it is unclear how polygenic risk funnels through these pathways to translate into syndromic illness. Using tensor decomposition, we analyze gene co-expression in the caudate nucleus, hippocampus, and dorsolateral prefrontal cortex of post-mortem brain samples from 358 individuals. We identify a set of genes predominantly expressed in the caudate nucleus and associated with both clinical state and genetic risk for schizophrenia that shows dopaminergic selectivity. A higher polygenic risk score for schizophrenia parsed by this set of genes predicts greater dopamine synthesis in the striatum and greater striatal activation during reward anticipation. These results translate dopamine-linked genetic risk variation into in vivo neurochemical and hemodynamic phenotypes in the striatum that have long been implicated in the pathophysiology of schizophrenia

Perspectives of Colorectal Cancer Risk and Screening Among Dominicans and Puerto Ricans: Stigma and Misperceptions

Colorectal cancer is the second most common cancer among Latinos, but a lower percentage of Latinos are screened than Whites and Blacks. Along with recognized economic barriers, differences in knowledge and perceptions might impede colorectal screening among Latinos. We conducted 147 individual, qualitative interviews with Dominicans and Puerto Ricans in the northeastern United States to explore their explanatory models for colorectal cancer and screening barriers. Many participants had not previously heard of colorectal cancer. The most commonly mentioned cause of colorectal cancer was anal sex. Also considered risks were “bad food,” digestion leading to constipation, and strained bowel movements. Screening barriers included stigma, misperceptions, embarrassment, and machismo. Progress toward increasing colorectal cancer screening requires normalization of this screening among Latinos. Higher patient familiarity, along with improved physician counseling and referral, might contribute to reducing stigma and other barriers, and to enhancing knowledge and Latino community support of colorectal cancer screening

Promoting self-directed learning skills in residency: a case study in program development

Self-directed learning (SDL) skills are essential for the formation and ongoing competence of today\u27s physicians who work in the context of expanding scientific knowledge and changing health care systems. In 2007-2008, the authors developed a program to promote SDL in the Brown University Family Medicine Residency. Through an iterative process, the project team juggled learning theories (i.e., Knowles\u27 SDL model, Collins\u27 cognitive apprenticeship model, and Quirk\u27s expertise development model) with curricular goals, instructional options, and local constraints to design a practical and theoretically robust intervention.The intervention that emerged from this process features a faculty physician serving as a learning coach who meets individually each month with all second-year residents to assist them in generating learning goals, reflecting on their learning experiences, and practicing evidence-based medicine (EBM) skills. An electronic portfolio serves as a documentation tool that supports reflection; residents record their goals and reflections in the portfolio, which also contains their formative assessments, procedure logs, and special projects. To address the hidden curriculum, the program designers took special care to avoid increasing faculty and resident workload and created a forum for discussion and group reflection. Program evaluation combines qualitative and quantitative methods, such as surveys of and interviews with residents and faculty, to assess changes in residents\u27 SDL and EBM skills and in the program\u27s educational culture. The authors use Kern and colleagues\u27 six-step model for curriculum development to describe both the unfolding of this complex project and the choices that resulted in the current program design