Breast cancer delay in Latinas: the role of cultural beliefs and acculturation.

Cultural beliefs about breast cancer may act as a barrier to Latina women seeking preventive services or timely follow-up for breast symptoms regardless of access. This study examines the association between factors and breast cancer cultural beliefs and the extent to which cultural beliefs are associated with delays in breast cancer care. Participants who were Latina, ages 30-79, and had been diagnosed with a primary breast cancer were examined (n = 181). Interviews included a 15-item cultural beliefs scale spanning beliefs inconsistent with motivation to seek timely healthcare. Self-reported date of symptom discovery, date of first medical presentation, and date of first treatment were used to construct measures of prolonged patient, clinical, and total delay. Logistic regression with model-based standardization was used to estimate crude and confounder-adjusted prevalence differences for prolonged delay by number of cultural beliefs held. Women held a mean score of three cultural beliefs. The belief most commonly held was, "Faith in God can protect you from breast cancer" (48 %). Holding three or more cultural beliefs was associated with lower acculturation, lower socioeconomic status and less access to care (p < 0.01). After adjusting for age, education, income, acculturation, trust, and insurance, likelihood of prolonged total delay remained 21 percentage points higher in women who held a higher number cultural beliefs (p = 0.02). Cultural beliefs may predispose Latina women to prolong delays in seeking diagnosis and treatment for breast symptoms. Cultural beliefs represent a potential point of intervention to decrease delays among Latina breast cancer patients.

Evaluating a novel health system intervention for chronic kidney disease care using the RE-AIM framework: Insights after two years.

INTRODUCTION: Using a quasi-experimental design, we implemented the Patient-Centered Medical Home for Kidney Disease (PCMH-KD), a comprehensive, multidisciplinary care team to improve quality of life and healthcare coordination for adult chronic hemodialysis (CHD) patients. This paper highlights our experience in the first two years of the study. We focus on the process dimensions of Reach, Adoption, and Implementation within the context of the RE-AIM framework. MATERIALS AND METHODS: We established a new PCMH-KD model at two outpatient dialysis centers. During the intervention phase, adult patients were recruited for participation and data collection. We monitored RE-AIM measures to identify areas for potential adaptation of the care model. RESULTS: During the start-up phase, we engaged patients and stakeholders in planning the intervention, established the new PCMH-KD team, and trained new and continuing clinicians and staff at two dialysis centers. In the intervention phase we recruited 155 patients to participate. Patients had individual visits with the PCP (40%) and the CHWs (92%) (Reach). Patient feedback informed procedures for appointment scheduling (Adoption). The new PCMH-KD team members were consistent in their roles. With staff changes, some responsibilities were adapted for cross coverage (Implementation). IMPLICATIONS: After one year of start-up and one year of intervention, active monitoring of Reach, Implementation and Adoption measures have facilitated necessary adaptions in the planned intervention to accommodate scheduling demands and patient feedback in the PCMH-KD model. Insights from this trial may inform care of CHD patients more broadly.

Patient and Other Stakeholder Engagement in Patient-Centered Outcomes Research Institute Funded Studies of Patients with Kidney Diseases.

Including target populations in the design and implementation of research trials has been one response to the growing health disparities endemic to our health care system, as well as an aid to study generalizability. One type of community-based participatory research is "Patient Centered-Research", in which patient perspectives on the germane research questions and methodologies are incorporated into the study. The Patient-Centered Outcomes Research Institute (PCORI) has mandated that meaningful patient and stakeholder engagement be incorporated into all applications. As of March 2015, PCORI funded seven clinically-focused studies of patients with kidney disease. The goal of this paper is to synthesize the experiences of these studies to gain an understanding of how meaningful patient and stakeholder engagement can occur in clinical research of kidney diseases, and what the key barriers are to its implementation. Our collective experience suggests that successful implementation of a patient- and stakeholder-engaged research paradigm involves: (1) defining the roles and process for the incorporation of input; (2) identifying the particular patients and other stakeholders; (3) engaging patients and other stakeholders so they appreciate the value of their own participation and have personal investment in the research process; and (4) overcoming barriers and challenges that arise and threaten the productivity of the collaboration. It is our hope that the experiences of these studies will further interest and capacity for incorporating patient and stakeholder perspectives in research of kidney diseases.

Rationale and design of a patient-centered medical home intervention for patients with end-stage renal disease on hemodialysis.

In the U.S., more than 400,000 individuals with end-stage renal disease (ESRD) require hemodialysis (HD) for renal replacement therapy. ESRD patients experience a high burden of morbidity, mortality, resource utilization, and poor quality of life (QOL). Under current care models, ESRD patients receive fragmented care from multiple providers at multiple locations. The Patient-Centered Medical Home (PCMH) is a team approach, providing coordinated care across the healthcare continuum. While this model has shown some early benefits for complex chronic diseases such as diabetes, it has not been applied to HD patients. This study is a non-randomized quasi-experimental intervention trial implementing a Patient-Centered Medical Home for Kidney Disease (PCMH-KD). The PCMH-KD extends the existing dialysis care team (comprised of a nephrologist, dialysis nurse, dialysis technician, social worker, and dietitian) by adding a general internist, pharmacist, nurse coordinator, and a community health worker, all of whom will see the patients together, and separately, as needed. The primary goal is to implement a comprehensive, multidisciplinary care team to improve care coordination, quality of life, and healthcare use for HD patients. Approximately 240 patients will be recruited from two sites; a non-profit university-affiliated dialysis center and an independent for-profit dialysis center. Outcomes include (i) patient-reported outcomes, including QOL and satisfaction; (ii) clinical outcomes, including blood pressure and diet; (iii) healthcare use, including emergency room visits and hospitalizations; and (iv) staff perceptions. Given the significant burden that patients with ESRD on HD experience, enhanced care coordination provides an opportunity to reduce this burden and improve QOL.

Defining natural history: assessment of the ability of college students to aid in characterizing clinical progression of Niemann-Pick disease, type C.

Niemann-Pick Disease, type C (NPC) is a fatal, neurodegenerative, lysosomal storage disorder. It is a rare disease with broad phenotypic spectrum and variable age of onset. These issues make it difficult to develop a universally accepted clinical outcome measure to assess urgently needed therapies. To this end, clinical investigators have defined emerging, disease severity scales. The average time from initial symptom to diagnosis is approximately 4 years. Further, some patients may not travel to specialized clinical centers even after diagnosis. We were therefore interested in investigating whether appropriately trained, community-based assessment of patient records could assist in defining disease progression using clinical severity scores. In this study we evolved a secure, step wise process to show that pre-existing medical records may be correctly assessed by non-clinical practitioners trained to quantify disease progression. Sixty-four undergraduate students at the University of Notre Dame were expertly trained in clinical disease assessment and recognition of major and minor symptoms of NPC. Seven clinical records, randomly selected from a total of thirty seven used to establish a leading clinical severity scale, were correctly assessed to show expected characteristics of linear disease progression. Student assessment of two new records donated by NPC families to our study also revealed linear progression of disease, but both showed accelerated disease progression, relative to the current severity scale, especially at the later stages. Together, these data suggest that college students may be trained in assessment of patient records, and thus provide insight into the natural history of a disease.