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Hypermobility spectrum disorders (HSD) and Ehlers–Danlos syndromes (EDS) are frequently underdiagnosed, contributing to patient dissatisfaction in the healthcare system. This study evaluated the health service utilization, care, and subjective experiences of living with chronic illness among adults with HSD and EDS in the United States and Canada. This was an anonymous, web-based, cross-sectional healthcare survey. The survey obtained basic demographic information, the Patient Assessment of Chronic Illness Care (PACIC+), as well as responses to questions on the use of healthcare and integrative medicine. A total of 353 surveys were received. The most common complementary therapies used were physical therapy (82%), massage (68%), yoga (58%), chiropractic (48%), and meditation (43%). Mean (SD) summary PACIC and PACIC 5 As scores were 2.16 (0.77) and 2.25 (0.83), respectively. Across all PACIC domains, mean scores of individuals whose typical doctor visit was 30 min or at least an hour were significantly higher than those of individuals who indicated typical visits of 15 min (all p < 0.0001 by one-way ANOVA). There was widespread agreement on the importance of patient-provider relationship and trust, physicians' understanding of the individual's complete medical history, and prioritization of physical and emotional safety (>95% agree or strongly agree to each). Individuals with HSD or EDS report low satisfaction with chronic illness care and commonly seek out complementary and self-administered therapies, likely in an attempt to manage symptoms. Respondents reported a desire for greater time and attention from physicians. Results from this study could educate the healthcare community to improve support mechanisms for HSD and EDS populations. Patients with hypermobility spectrum disorders (HSD) or Ehlers–Danlos syndromes (EDS) express a desire for patient-centered care and peer support from other individuals with HSD or EDS. Individuals with HSD or EDS have typically seen multiple doctors for their condition and their satisfaction with chronic care, as measured by the Patient Assessment of Chronic Illness Care (PACIC+), is low. The use of various complementary and integrative health treatments, as well as specialized diets, is common in this population, and might be beneficial for symptom management. Healthcare delivery for HSD and EDS may require a multidisciplinary healthcare team, as complementary and self-care modalities are typically used in addition to physical therapy, pain medication, and other conventional care. [ABSTRACT FROM AUTHOR]

Objective: To characterize the population of subfertile and infertile men in the United States who lack access to infertility services.Design: Analysis of the 2011-2013, 2013-2015, and 2015-2017 waves of the National Survey for Family Growth (NSFG) dataset.Setting: Not applicable.Patient(s): Noninstitutionalized civilian men, ages 15-45 years, who were married or lived with a woman and had not undergone a vasectomy.Intervention: Not applicable.Main Outcome Measure(s): Access to infertility services.Result(s): Compared with people who had used infertility services, unevaluated men who self-reported as infertile or subfertile were younger, had lower household incomes, were less educated, and were less likely to be married. Unevaluated infertile men were less likely to have a regular place where they received health care, were more likely to be uninsured, and had a poorer perception of their personal health. On multivariable logistic regression analysis, average household income, marital status, education level, and current insurance status remained significant.Conclusion(s): Infertile men who had not used infertility services were less educated, were less likely to have been married, and had a lower household income and private insurance rate compared with men who had used infertility services. These demographic and health care utilization differences can help inform public policy related to fertility. [ABSTRACT FROM AUTHOR]

Background: Infections are common occurrences at end of life that are associated with high rates of morbidity and mortality among frail elderly individuals. The problem of infections in nursing homes has led to a subsequent overuse and misuse of antibiotics in this already-frail population. Improving palliative care in nursing homes has been proposed as a key strategy to reduce the use of antibiotics. Aim: The aim of this study was to describe the current status of how nursing homes integrates palliative care and infection management at end of life across the nation. Design: This is a cross-sectional survey of nationally representative US nursing homes. Setting/participants: Between November 2017 and October 2018, a survey was conducted with a nationally representative random sample of nursing homes and 892 surveys were completed (49% response rate). The weighted study sample represented 15,381 nursing homes across the nation. Results: Most nursing homes engaged in care plan documentation on what is important to residents (90.43%) and discussed spiritual needs of terminally ill residents (89.50%). In the event of aspiration pneumonia in terminally ill residents, 59.43% of nursing homes responded that resident would be transferred to the hospital. In suspected urinary tract infection among terminally ill residents, 66.62% of nursing homes responded that the resident will be treated with antibiotics. Conclusion: The study found wide variations in nursing home palliative care practices, particularly for timing of end-of-life care discussions, and suboptimal care reported for antibiotic usage. Further education for nursing home staff on appropriate antibiotic usage and best practices to integrate infection management in palliative care at the end of life is needed. [ABSTRACT FROM AUTHOR]

Abstract: Purpose: The aim of this study was to examine opinions and practices of US critical care practitioners (USCCPs) toward corticosteroid therapy in adult patients with severe sepsis or septic shock. Materials and Methods: A multicenter, electronic survey of USCCP members of the Society of Critical Care Medicine was conducted between March 18 and July 31, 2009. Results: A total of 542 USCCPs responded to the survey. The majority (83%) do not commonly use corticosteroids in adult patients with severe sepsis; however, up to 81% report use of corticosteroids for septic shock. Twenty-eight percent believe that corticosteroids reduce mortality in septic shock, whereas 27% do not and 45% are unsure. The decision to initiate therapy is based, more often, on a patient''s clinical status (65%) vs serum cortisol analysis (35%). Hydrocortisone is the most common corticosteroid prescribed (93%), with a median dosage of 200 mg/d and administration via intermittent intravenous injection. The Corticosteroid Therapy of Septic Shock trial had a large impact on survey respondents, with 62% reporting a practice change. Among the 19% of practitioners who do not prescribe corticosteroids, the most common reason was lack of proven survival benefit. Conclusions: Corticosteroids are commonly used by USCCPs in adult patients with septic shock; however, criteria used to initiate therapy and opinions regarding their impact vary. [Copyright &y& Elsevier]

Background: The coronavirus disease 2019 (COVID-19) pandemic has produced numerous safety concerns for sleep medicine patients and health-care workers, especially related to the use of aerosol-generating positive airway pressure devices. Differences between physician and sleep technologist concerns with regard to viral exposure and mitigation strategies may inform protocols to ensure safety and promote patient and health-care worker resilience and retention., Methods: An anonymous online survey aimed at sleep medicine practitioners was active from April 29, 2020 to May 8, 2020., Results: We obtained 379 responses, including from 75 physicians and 283 technologists. The proportion of all the respondents who were extremely/very concerned about the following: exposing patients (70.8%), exposing technologists (81.7%), and droplet (82.7%) and airborne (81.6%) transmission from CPAP. The proportion of respondents who felt that aerosol precautions were extremely/very important varied by scenario: always needed (45.6%); only with CPAP (25.9%); and needed, despite negative viral testing (67.0%). More technologists versus physicians rated the following as extremely/very important: testing parents for COVID-19 (71.2 vs 47.5%; P = .01), high-efficiency particulate air filters (75.1 vs 61.8%; P = .02), and extremely/very concerned about shared-ventilation systems (65.9 vs 51.5%; shared ventilation P = .041). The respondents in northeastern and western United States were more concerned about the availability of COVID-19 testing than were those in other regions of the United States. Among the total number of respondents, 68.0% expected a ≥ 50% drop in patients willing to have in-laboratory testing, with greatest drops anticipated in northeastern United States., Conclusions: Sleep health-care workers reported high levels of concern about exposure to COVID-19. Physicians and technologists generally showed high concordance with regard to the need for mitigation strategies, but the respondents differed widely with regard to which strategies were necessary., Competing Interests: The authors have disclosed no conflicts of interest., (Copyright © 2021 by Daedalus Enterprises.)

Purpose: To ascertain renal cell carcinoma (RCC) financial toxicity on COVID-19 during the COVID-19 crisis as patients are struggling with therapeutic and financial implications., Methods: An online survey was conducted from March 22 to March 25, 2020. It included baseline demographic, clinicopathologic, treatment-related information, anxiety levels related to COVID-19, questions related to financial concerns about COVID-19 as well as the validated 11-item COST measure., Results: Five-hundred-and-thirty-nine patients (39%:58% male:female) from 14 countries responded. 23% of the patients did not feel in control of their financial situation but 8% reported being very satisfied with their finances. The median COST score was 21.5 (range 1-44). Metastatic patients who have not started systemic therapy had a COST score (19.8 range 2-41) versus patients on oral systemic therapy had a COST score (23.9 range 4-44). Patients in follow-up after surgery had a median COST score at 20.8 (range 1-40). A low COST scores correlated (p < 0.001) were female gender (r = 0.108), younger age (r = 0.210), urban living situation (r = 0.68), a lower educational level (r = 0.155), lower income (r = 0.165), higher anxiety about acquiring COVID-19 (r = 0.198), having metastatic disease (r = 0.073) and a higher distress score about cancer progression (r = 0.224)., Conclusion: Our data highlight severe financial impact of COVID-19. Acknowledging financial hardship and thorough counseling of cancer patients should be part of the conversation during the pandemic. Treatment and surveillance of RCC patients might have to be adjusted to contemplate financial and medical needs., (© 2020. The Author(s).)

Population-based surveys provide important information about cancer-related health behaviors across the cancer care continuum, from prevention to survivorship, to inform cancer control efforts. These surveys can illuminate cancer disparities among specific populations, including rural communities. However, due to small rural sample sizes, varying sampling methods, and/or other study design or analytical concerns, there are challenges in using population-based surveys for rural cancer control research and practice. Our objective is three-fold. First, we examined the characterization of "rural" in four, population-based surveys commonly referenced in the literature: 1) Health Information National Trends Survey (HINTS); 2) National Health Interview Survey (NHIS); 3) Behavioral Risk Factor Surveillance System (BRFSS); and 4) Medical Expenditures Panel Survey (MEPS). Second, we identified and described the challenges of using these surveys in rural cancer studies. Third, we proposed solutions to address these challenges. We found that these surveys varied in use of rural-urban classifications, sampling methodology, and available cancer-related variables. Further, we found that accessibility of these data to non-federal researchers has changed over time. Survey data have become restricted based on small numbers (i.e., BRFSS) and have made rural-urban measures only available for analysis at Research Data Centers (i.e., NHIS and MEPS). Additionally, studies that used these surveys reported varying proportions of rural participants with noted limitations in sufficient representation of rural minorities and/or cancer survivors. In order to mitigate these challenges, we propose two solutions: 1) make rural-urban measures more accessible to non-federal researchers and 2) implement sampling approaches to oversample rural populations., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Background: Following a 2010-2011 pilot intervention in which a limited sample of primary care doctors offered their patients secure Web-based portal access to their office visit notes, the participating sites expanded OpenNotes to nearly all clinicians in primary care, medical, and surgical specialty practices.Objective: The aim of this study was to examine the ongoing experiences and perceptions of patients who read ambulatory visit notes written by a broad range of doctors, nurses, and other clinicians.Methods: A total of 3 large US health systems in Boston, Seattle, and rural Pennsylvania conducted a Web-based survey of adult patients who used portal accounts and had at least 1 visit note available in a recent 12-month period. The main outcome measures included patient-reported behaviors and their perceptions concerning benefits versus risks.Results: Among 136,815 patients who received invitations, 21.68% (29,656/136,815) responded. Of the 28,782 patient respondents, 62.82% (18,081/28,782) were female, 72.90% (20,982/28,782) were aged 45 years or older, 76.94% (22,146/28,782) were white, and 14.30% (4115/28,782) reported fair or poor health. Among the 22,947 who reported reading 1 or more notes, 3 out of 4 reported reading them for 1 year or longer, half reported reading at least 4 notes, and 37.74% (8588/22,753) shared a note with someone else. Patients rated note reading as very important for helping take care of their health (16,354/22,520, 72.62%), feeling in control of their care (15,726/22,515, 69.85%), and remembering the plan of care (14,821/22,516, 65.82%). Few were very confused (737/22,304, 3.3%) or more worried (1078/22,303, 4.83%) after reading notes. About a third reported being encouraged by their clinicians to read notes and a third told their clinicians they had read them. Less educated, nonwhite, older, and Hispanic patients, and individuals who usually did not speak English at home, were those most likely to report major benefits from note reading. Nearly all respondents (22,593/22,947, 98.46%) thought Web-based access to visit notes a good idea, and 62.38% (13,427/21,525) rated this practice as very important for choosing a future provider.Conclusions: In this first large-scale survey of patient experiences with a broad range of clinicians working in practices in which shared notes are well established, patients find note reading very important for their health management and share their notes frequently with others. Patients are rarely troubled by what they read, and those traditionally underserved in the United States report particular benefit. However, fewer than half of clinicians and patients actively address their shared notes during visits. As the practice continues to spread rapidly in the United States and internationally, our findings indicate that OpenNotes brings benefits to patients that largely outweigh the risks. [ABSTRACT FROM AUTHOR]