Background Organ transplant is the preferred treatment for end-stage organ disease, yet the majority of patients with end-stage organ disease are never placed on the transplant waiting list. Limited access to the transplant waiting list combined with the scarcity of the organ pool result in over 100,000 deaths annually in the United States. Patients face unique barriers to referral and acceptance for organ transplant based on social determinants of health, and patients from disenfranchised groups suffer from disproportionately lower rates of transplantation. Our objective was to review the literature describing disparities in access to organ transplantation based on social determinants of health to integrate the existing knowledge and guide future research. Methods We conducted a scoping review of the literature reporting disparities in access to heart, lung, liver, pancreas and kidney transplantation based on social determinants of health (race, income, education, geography, insurance status, health literacy and engagement). Included studies were categorized based on steps along the transplant care continuum: referral for transplant, transplant evaluation and selection, living donor identification/evaluation, and waitlist outcomes. Results Our search generated 16,643 studies, of which 227 were included in our final review. Of these, 34 focused on disparities in referral for transplantation among patients with chronic organ disease, 82 on transplant selection processes, 50 on living donors, and 61 on waitlist management. In total, 15 studies involved the thoracic organs (heart, lung), 209 involved the abdominal organs (kidney, liver, pancreas), and three involved multiple organs. Racial and ethnic minorities, women, and patients in lower socioeconomic status groups were less likely to be referred, evaluated, and added to the waiting list for organ transplant. The quality of the data describing these disparities across the transplant literature was variable and overwhelmingly focused on kidney transplant. Conclusions This review contextualizes the quality of the data, identifies seminal work by organ, and reports gaps in the literature where future research on disparities in organ transplantation should focus. Future work should investigate the association of social determinants of health with access to the organ transplant waiting list, with a focus on prospective analyses that assess interventions to improve health equity.

Abstract Background Health reform and the merits of Medicaid expansion remain at the top of the legislative agenda, with growing evidence suggesting an impact on cancer care and outcomes. A systematic review was undertaken to assess the association between Medicaid expansion and the goals of the Patient Protection and Affordable Care Act in the context of cancer care. The purpose of this article is to summarize the currently published literature and to determine the effects of Medicaid expansion on outcomes during points along the cancer care continuum. Methods A systematic search for relevant studies was performed in the PubMed/MEDLINE, EMBASE, Scopus, and Cochrane databases. Three independent observers used an abstraction form to code outcomes and perform a quality and risk of bias assessment using predefined criteria. Results A total of 48 studies were identified. The most common outcomes assessed were the impact of Medicaid expansion on insurance coverage (23.4% of studies), followed by evaluation of racial and/or socioeconomic disparities (17.4%) and access to screening (14.5%). Medicaid expansion was associated with increases in coverage for cancer patients and survivors as well as reduced racial- and income-related disparities. Conclusions Medicaid expansion has led to improved access to insurance coverage among cancer patients and survivors, particularly among low-income and minority populations. This review highlights important gaps in the existing oncology literature, including a lack of studies evaluating changes in treatment and access to end-of-life care following implementation of expansion.

For parents of children with an Autism spectrum disorder (ASD), high quality, easily accessible information and a strong peer network can be the key to raising a happy, healthy child, and maintaining family well-being and emotional resilience. This article reports the findings of an anonymous survey examining the information source preferences for 935 parents of individuals with ASDs in North Carolina. Data indicates that parents show similar information seeking patterns across the age spectrum, that availability of information (as indicated by overall information source selection) decrease as children age. It also shows that parents rely heavily on local sources of information, preferring them to nonlocal sources (such as the internet) for many types of information.

Despite vaccines’ effectiveness in reducing the rate of preventable diseases, vaccine hesitancy has threatened public health and economies worldwide. Healthcare providers’ (HCP) communications and behavior strongly influence patient receptivity and uptake. The goal of this review was to examine HCP vaccine perceptions, knowledge, and reservations and how these attitudes affect their recommendations and vaccination practices. Primary research studies published by 16 September 2020 were searched in PubMed, Web of Science, Embase, CINAHL, and PsycINFO. A 14-item scale was developed for survey study and risk of bias appraisal (SSRBA). In total, 96 papers from 34 countries were included, covering 17 vaccines (HPV and influenza vaccines the most studied). Recommendation was positively associated with provider knowledge and experience, beliefs about disease risk, and perceptions of vaccine safety, necessity, and efficacy. HCP vaccination attitudes and practices varied across specialties, vaccines, and countries; demographic impact was inconclusive. Barriers included anticipation of patient/parental concerns or refusal, lacking clear guidelines, time constraints, and cost. For HPV, vaccines were more often recommended to older, female adolescents and by physicians who discussed sexual health. HCPs are vital advocates for patients and the public, but studies indicated a prevalence of provider hesitancy pertaining to inadequate knowledge, low vaccine confidence, and suboptimal uptake themselves. Improving HCP knowledge and assuring their access to information they deem trustworthy are essential to supporting HCPs‘ role as “trusted messengers” to promote vaccine acceptance.

Objective: Patients exhibiting life-threatening symptoms associated with the alpha-gal food allergy (delayed urticaria or anaphylaxis due to mammalian meat) are frequently undiagnosed, causing unnecessary emergency department (ED) and health care visits, and extensive pain and suffering. This study aimed to determine the path to diagnosis experienced by alpha-gal patients. Methods: Semistructured interviews were conducted from March to June 2016 with a chronological systematic sample of approximately 10% of patients diagnosed with alpha-gal and treated by the University of North Carolina Allergy and Immunology Clinic (n = 28). Main outcome measures included average length of time between first symptoms’ appearance and diagnosis, number and type of health care encounters en route to diagnosis, and typical symptom severity. Results: Six interviewees (21%) were diagnosed within a year of experiencing symptoms, of the remaining 22, mean time to diagnosis was 7.1 years. In over 100 medical encounters (including 28 ED visits and 2 urgent care) the correct diagnosis or effective diagnosing referral occurred less than 10% of the time. Seventy-one percent (20/28) described their first symptoms as severe. More patients found the allergist specializing in this condition on their own (n = 12; 43%) than those who were formally diagnosed or received referrals (n = 10; 36%) through the health care system. Conclusions: The medical community is challenged to stay abreast of emerging and newly uncovered illnesses through traditional medical literature communication channels. Presently, patients more often discover a diagnosis of alpha-gal allergy by using information resources on their own than by presenting to the ED with anaphylaxis.

No abstract

Even in a digitally advanced society, much of our daily lives is based in place, but information behavior research has largely ignored place as theoretically relevant to information behavior. This study explores the implications of a place-based approach to studying information practices, and examines factors that influence information seeking and sharing in place-based communities among parents of individuals with disabilities. Based on qualitative data gathered from 35 parents of individuals with disabilities, it proposes a spatial model of information source preferences based on the theory of information horizons, and discusses implications of the model for future research related to information seeking and places. It also presents substantive place-related findings about local information needs, including discussion of the local parent network as an information seeking system.

No abstract