Do patient-reported outcome measures measure up? A qualitative study to examine perceptions and experiences with heart failure proms among diverse, low-income patients

Background The Kansas City Cardiomyopathy Questionnaire (KCCQ) is a Patient-Reported Outcome Measure (PROM) used to evaluate the health status of patients with heart failure (HF) but has predominantly been tested in settings serving predominately white, male, and economically well-resourced populations. We sought to examine the acceptability of the shorter version of the KCCQ (KCCQ-12) among racially and ethnically diverse patients receiving care in an urban, safety-net setting. Methods We conducted cognitive interviews with a diverse population of patients with heart failure in a safety net system to assess their perceptions of the KCCQ-12. We conducted a thematic analysis of the qualitative data then mapped themes to the Capability, Opportunity, Motivation Model of Behavior framework. Results We interviewed 18 patients with heart failure and found that patients broadly endorsed the concepts of the KCCQ-12 with minor suggestions to improve the instrument’s content and appearance. Although patients accepted the KCCQ-12, we found that the instrument did not adequately measure aspects of health care and quality of life that patients identified as being important components of managing their heart failure. Patient-important factors of heart failure management coalesced into three main themes: social support, health care environment, and mental health. Conclusions Patients from this diverse, low-income, majority non-white population experience unique challenges and circumstances that impact their ability to manage disease. In this study, patients were receptive to the KCCQ-12 as a tool but perceived that it did not adequately capture key health components such as mental health and social relationships that deeply impact their ability to manage HF. Further study on the incorporation of social determinants of health into PROMs could make them more useful tools in evaluating and managing HF in diverse, underserved populations.

Exploratory attitude survey of homeless persons regarding telecare services in shelters providing mid- and long-term accommodation: The importance of trust

Background With the expansion of digital health, it is imperative to consider intervention techniques in order not to be the cause of even more social health inequalities in underserved populations struggling with chronic diseases. Telemedicine solutions for homeless persons might compensate for shortcomings in access to valuable health services in different settings. The main aim of our research was to examine the attitudes and openness of homeless persons regarding telecare on a Hungarian sample. Methods Quantitative survey among homeless people (n = 98) was completed in 4 shelters providing mid- and long-term accommodation in Budapest, Hungary. Attitudes regarding healthcare service accessibility and telecare were measured by a self-developed questionnaire of the research team. Telecare attitude comparison was made with data of a Hungarian weighted reference group of non-homeless persons recruited from 2 primary care units (n = 110). Results A significant fraction of homeless people with mid- or long-term residency in homeless shelters did not oppose the use of telecare via live online video consultation and there was no difference compared to the national reference group (averages of 3.09 vs. 3.15, respectively). Results of the homeless group indicate that those more satisfied with healthcare services, in general, manifest more openness to telecare. It is clearly demonstrated by the multivariate analysis that those participants in the homeless group who had problems getting health care in the last year definitely preferred in-person doctor-patient consultations. Conclusion Digital health technologies offer a potentially important new pathway for the prevention and treatment of chronic conditions among homeless persons. Based on the attitudes towards telecare, initiating an on-site telecare program for mid- and long-term residents of homeless shelters might enable better care continuity. Our results draw attention to the key factors including building trust in the implementation of such programs among underserved and other vulnerable patient groups.

Equitable COVID-19 Vaccination for Hispanics in the United States: A Success Story from California Border Communities

The ongoing 2019 novel coronavirus disease (COVID-19) pandemic continues to impact the health of individuals worldwide, including causing pauses in lifesaving cancer screening and prevention measures. From time to time, elective medical procedures, such as those used for cancer screening and early detection, were deferred due to concerns regarding the spread of the infection. The short- and long-term consequences of these temporary measures are concerning, particularly for medically underserved populations, who already experience inequities and disparities related to timely cancer care. Clearly, the way out of this pandemic is by increasing COVID-19 vaccination rates and doing so in an equitable manner so that communities most affected receive preferential access and administration. In this article, we provide a perspective on vaccine equity by featuring the experience of the California Hispanic community, who has been disproportionately impacted by the pandemic. We first compared vaccination rates in two United States–Mexico border counties in California (San Diego County and Imperial County) to counties elsewhere in California with a similar Hispanic population size. We show that the border counties have substantially lower unvaccinated proportions of Hispanics compared to other counties. We next looked at county vaccination rates according to the California Healthy Places Index, a health equity metric and found that San Diego and Imperial counties achieved more equitable access and distribution than the rest of the state. Finally, we detail strategies implemented to achieve high and equitable vaccination in this border region, including Imperial County, an agricultural region that was California’s epicenter of the COVID-19 crisis at the height of the pandemic. These United States–Mexico border county data show that equitable vaccine access and delivery is possible. Multiple strategies can be used to guide the delivery and access to other public health and cancer preventive services.

The Biophilia Hypothesis and Mental Health

The purpose of this chapter is to highlight literature related to the benefits of spending time in nature and the usefulness of biophilic design to boost mental health. Biophilic design can increase feelings of well-being of workers or inhabitants, increase connection to purpose and meaning-making, and inspire creativity. This chapter will outline (1) research connected to the mental health benefits of spending time in nature for both children and adults; (2) a description of the biophilia hypothesis; (3) an exploration of nature, spirituality, and meaning-making through the lens of the biophilia hypothesis; (4) biophilic design and equity regarding nature access in urban areas for underserved populations; and (5) a call for increased integration of biophilic design into architecture and urban planning.

A Social Justice Approach to Developing Equity and Diversity in Gifted Programming

This chapter encourages educators to expand boundaries and build new, innovative approaches to increasing equity and diversity in gifted programming. Using a social justice approach to gifted programming, the authors describe methods for overcoming barriers that have historically, and continue, to suppress access to appropriate services for underserved populations in gifted education. This chapter provides an impetus for educators to reflect on ways to build upon and improve existing structures to adopt and adapt practices that embrace an inclusive approach to gifted identification and programming.

A global genetic epidemiological review of pseudoexfoliation syndrome

Pseudoexfoliation (PXF) syndrome is an important public health concern requiring individual population level analysis. Disease prevalence differs by geographic location and ethnicity, and has environmental, demographic, genetic, and molecular risk factors have been demonstrated. Epidemiological factors that have been associated with PXF include age, sex, environmental factors, and diet. Genetic and molecular components have also been identified that are associated with PXF. Underserved populations are often understudied within scientific research, including research about eye disease such as PXF, contributing to the persistence of health disparities within these populations. In each population, PXF needs may be different, and by having research that identifies individual population needs about PXF, the resources in that population can be more efficiently utilized. Otherwise, PXF intervention and care management based only on the broadest level of understanding may continue to exacerbate health disparities in populations disproportionally burdened by PXF.

Are we making a difference? Outreach evaluation in practice

Donald A.B. Lindberg, M.D., brought with him when he joined NLM an inquisitive mind, tech savvy, and new ideas. He was an early advocate of both outreach and evaluation innovation at NLM. Dr. Lindberg initiated and supported multiple pilot test and implementation projects to strengthen NLM’s health information outreach to healthcare providers, research scientists, health science and hospital librarians, and the general public, including minority and underserved populations. He helped steer NLM’s transition to the Internet, and NLM’s development of a robust framework for evaluating Internet and Web-based health information dissemination and outreach to its many audiences. Dr. Lindberg’s leadership led to numerous landmark accomplishments, including the capacity-building “Measuring the Difference” outreach evaluation Guide, and a multi-dimensional approach to Internet and website evaluation that placed NLM at the forefront of federal agencies using these new and emerging technologies to support their missions.

Eliciting Requirements for a Diabetes Self-Management Application for Underserved Populations: A Multi-Stakeholder Analysis

Medically underserved communities have limited access to effective disease management resources in the U.S. Mobile health applications (mHealth apps) offer patients a cost-effective way to monitor and self-manage their condition and to communicate with providers; however, current diabetes self-management apps have rarely included end-users from underserved communities in the design process. This research documents key stakeholder-driven design requirements for a diabetes self-management app for medically underserved patients. Semi-structured survey interviews were carried out on 97 patients with diabetes and 11 healthcare providers from medically underserved counties in South Texas, to elicit perspectives and preferences regarding a diabetes self-management app, and their beliefs regarding such an app’s usage and utility. Patients emphasized the need for accessible educational content and for quick access to guidance on regulating blood sugar, diet, and exercise and physical activity using multimedia rather than textual forms. Healthcare providers indicated that glucose monitoring, educational content, and the graphical visualization of diabetes data were among the top-rated app features. These findings suggest that specific design requirements for the underserved can improve the adoption, usability, and sustainability of such interventions. Designers should consider health literacy and numeracy, linguistic barriers, data visualization, data entry complexity, and information exchange capabilities.

Enabling Rural Telehealth: Focus Group Study with Older Adults in Underserved Rural Communities (Preprint)

BACKGROUND Telehealth is often suggested to improve access to healthcare and has had significant publicity internationally during the Covid-19 pandemic. However, there is limited research examining the telehealth needs of underserved populations such as rural communities. OBJECTIVE The aim of this study was to investigate enablers for telehealth use in rural underserved populations to improve access to healthcare for rural older adults. METHODS 7 focus group discussions and 13 individual interviews were held across 4 diverse underserved rural communities. 98 adults, aged 55 years and over, participated. Participants were asked if they had used telehealth, how they saw their community’s health service needs evolving, how telehealth might help provide these services, and perceived barriers and enablers to telehealth for older adults in rural communities. Focus group transcripts were thematically analysed. RESULTS The term ‘telehealth’ was not initially understood by many participants and required explanation. The likelihood of using telehealth varied between those who had used telehealth and those who had not. Those who had used telehealth reported very positive experiences (time and cost savings) and would be more likely to use telehealth again. Two main themes were identified through an equity lens. The first theme was “trust” with three sub-themes – trust in the telehealth technology, trust in the user (consumer and health provider) and trust in the health system. Having access to reliable and affordable internet connectivity and digital devices was a key enabler for telehealth use. Most rural areas had intermittent, unreliable internet connectivity. Having easy access to user support was another key enabler. Trust in the health system focused on waiting times, lack of/delayed communication and coordination, and cost. The second theme was “choice” with three sub-themes – health service access, consultation type and telehealth deployment. Access to health services by telehealth needs to be culturally appropriate and enable access to currently limited or absent services such as mental health and specialist services. Accessing specialist care by telehealth was extremely popular but some participants would rather be seen in person. A major enabler for telehealth was deploying telehealth by a fixed community ‘hub’ or on a mobile bus, with support available, and especially when combined with non-health related services such as online banking. CONCLUSIONS Overall, participants were keen on the idea of telehealth. Several barriers and enablers were identified. The term ‘telehealth’ is not well understood. The unreliable and expensive connectivity options available to the rural communities has limited the telehealth experience to phone or patient portal use, for those who have connectivity. Having the opportunity to try telehealth, especially using video, would increase understanding and acceptance of telehealth. The study highlights that local rural communities need to be involved in the design of telehealth services within their community.