Family caregivers support their patient's decision to participate in a phase 1 clinical trial: Weighing the pros and cons, bearing the costs.

OBJECTIVES: When patients with advanced cancer pursue phase 1 clinical trials, family caregivers are impacted as they adopt new roles and responsibilities in time-pressured, uncertain circumstances. This study explored the nature of the caregivers' participation in patients' decision to pursue phase 1 clinical trials and the early impact of the decision on the caregiver. METHODS: Semi-structured interviews were conducted with 19 family caregivers of advanced cancer patients who had agreed to participate in phase 1 clinical trials. They were coded for information about the caregiver's relationship with the patient, typical style of decision-making together, understanding of the patient's prognosis and trial, contributions to decision-making and the initial impacts of the trial on the caregiver. Codes illuminating the research questions were grouped into categories and themes, compared across transcripts and examined against the literature. RESULTS: Caregivers unequivocally supported the patients' decision to pursue the phase 1 trial as they hoped that the patient would derive medical benefit from the trial. They withheld their opinions and fears about the trial from the patients to support patient autonomy during the decision-making process. The patient's decision to participate increased the caregivers' burdens and deprived them of time spent on pleasurable activities at end of life. CONCLUSIONS: Respecting the patients' personal autonomy, caregivers supported the trial, despite the complex caregiving required. As the success of phase 1 trials relies on caregiver involvement, it is imperative that healthcare professionals be sensitized to the support needs of these caregivers.

The World Ovarian Cancer Coalition Every Woman Study: identifying challenges and opportunities to improve survival and quality of life.

INTRODUCTION: With the global incidence of ovarian cancer set to rise by 55% to 371 000 per year by 2035, current 5-year survival rates below 50%, and 15% of women with ovarian cancer dying within 2 months of diagnosis, urgent action is required to improve survival and quality of life. OBJECTIVE: To deal with the evidence gap relating to the experience of women with the disease around the globe and identify opportunities to drive progress. METHODS: The study included a review of global trends in incidence, mortality, and survival (October 2017); qualitative interviews with women and clinicians in 16 countries (December 2017); and an online survey for women available in 15 different languages (open for 2 months, March to early May 2018). Women were eligible to participate if they had been diagnosed in the previous 5 years and were proficient in one of the 15 languages offered. RESULTS: A total of 1531 women from 44 countries took part in the analysis. On average, 69.1% of women were not aware of ovarian cancer before their own diagnosis, varying from 50.9% (Hungary) to 86.4% (Brazil). A total of 78.3% of symptomatic women sought medical help, varying from 62.8% (Japan) to 87.7% (UK). Fewer than half of the women visited a doctor within 1 month (46.3%) of experiencing symptoms, varying from 38.5% (USA) to 77.3% (Germany), and a quarter of women waited 3 months or more. On average, 43.2% of women were diagnosed within 1 month of visiting a doctor, ranging from 30% (UK) to 62.3% (Italy). The average estimated time from experiencing symptoms to diagnosis was 31 weeks, but this ranged from 21.3 (Germany) to 39.7 (Brazil). Rates of post-diagnosis genetic testing ranged from 5.0% (Japan) to 79.1% (USA). Clinicians indicated that access to specialist treatment in high-volume centers varies greatly by country and region. CONCLUSION: The findings of this study identify some of the major challenges and opportunities to improve the time to diagnosis and management of women with ovarian cancer. These problems vary widely by country, and reducing the variability is an important first step towards improving outcomes for women with ovarian cancer.

Micro-Meso-Macro Practice Tensions in Using Patient-Reported Outcome and Experience Measures in Hospital Palliative Care.

This article applies a micro-meso-macro analytical framework to understand clinicians' experiences and perspectives of using patient-reported outcome and experience measures (PROMs and PREMs) in routine hospital-based palliative care. We structure our discussion through qualitative analysis of a design and implementation project for using an electronic tablet-based tool among hospital-based palliative clinicians to assess patients' and their family caregivers' quality of life concerns and experiences of care. Our analysis identified three categories of practice tensions shaping clinicians' use of PROMs and PREMs in routine care: tensions surrounding implementation, tensions in standardization and quantification, and tensions that arose from scope of practice concerns. Our findings highlight that clinicians necessarily work within the confluence of multiple system priorities, that navigating these priorities can result in irreducible practice tensions, and that awareness of these tensions is a critical consideration when integrating PROMs and PREMs into routine practice.

Colorectal cancer screening in the United States: Trends from 2008 to 2015 and variation by health insurance coverage.

Regular colorectal cancer (CRC) screening is recommended for reducing CRC incidence and mortality. This paper provides an updated analysis of CRC screening in the United States (US) and examines CRC screening by several features of health insurance coverage. Recommendation-consistent CRC screening was calculated for adults aged 50-75 in 2008, 2010, 2013 and 2015 using data from the National Health Interview Survey. CRC screening prevalence in 2015 was described overall and by sociodemographic subgroups. CRC screening by health insurance coverage was further examined using multivariable logistic regression, stratified by age (50-64 years and 65-75 years) and adjusted for age, race/ethnicity, sex, education, income, time in US, and comorbid conditions. Recommendation-consistent screening increased from 51.6% in 2008 to 58.3% in 2010 (p < 0.001). Use plateaued from 2010 to 2013 but increased to 61.3% in 2015 (p < 0.001). In 2015, adults aged 50-64 years with traditional employer-sponsored private insurance were more likely to be screened (62.2%) than those with traditional private direct purchase plans (50.9%) and the uninsured (24.8%) (p < 0.01, respectively). After multivariable adjustment, differences between traditional employer-sponsored private insurance and the uninsured remained statistically significant. Adults aged 65-75 with Medicare and private insurance were more likely to be screened (76.3%) than those with Medicare, no supplemental insurance (68.8%) or Medicare and Medicaid (65.2%) (p < 0.001). After multivariable adjustment, the differences between Medicare and private insurance and Medicare no supplemental insurance remained statistically significant. CRC screening rates have increased over time, but certain segments of the population, especially the uninsured, continue to screen below recommended levels.

Dental Care Among Adults Age 65 and Older: United States, 2022.

Oral health is associated with overall health, especially in older adults (age 65 and older). Chronic conditions in older adults may affect oral health, and poor oral health may increase the risk of certain chronic conditions (1-3). Poor oral health has also been associated with increased cardiovascular disease risk (4). Several factors, including chronic conditions, health status, race, and income have been associated with reduced dental care use among older adults (5-9). This report describes the percentage of older adults who had a dental visit in the past 12 months by selected sociodemographic characteristics and chronic conditions using the 2022 National Health Interview Survey (NHIS). .

Prescription Medication Use, Coverage, and Nonadherence Among Adults Age 65 and Older: United States, 2021-2022.

Objectives: This report provides a comprehensive look at prescription medication use, prescription drug coverage, and cost-related nonadherence among adults age 65 and older (older adults). Methods: Data from the 2021-2022 National Health Interview Survey were used to report prescription medication use in the past 12 months, prescription drug coverage at the time of interview, and cost-related nonadherence in the past 12 months among older adults. Two types of cost-related nonadherence are reported: 1) not getting needed prescription medication due to cost; and 2) not taking medication as prescribed due to cost (skipping doses, delaying filling a prescription, and taking less medication than prescribed) in the past 12 months. All estimates are presented by sex, age group, race and Hispanic origin, family income, food insecurity, urbanization, education, marital status, health insurance coverage, health status, disability status, and number of chronic conditions. Results: In 2021-2022, 88.6% of older adults took prescription medication, 82.7% had prescription drug coverage, 3.6% did not get needed prescription medication due to cost, and 3.4% did not take medication as prescribed due to cost. Older adults with no prescription drug coverage were more likely to not get prescription medication and to not take needed medication as prescribed than older adults with private or public prescription drug coverage. For both measures, cost-related nonadherence was six times higher among older adults who were food insecure compared with those who were food secure, and more than twice as likely among older adults reporting fair or poor health or with disabilities compared with those in excellent, very good, or good health, or without disabilities.

The every woman study™ low- and middle-income countries edition protocol: A multi-country observational study to assess opportunities and challenges to improving survival and quality of life for women with ovarian cancer.

BACKGROUND: Ovarian cancer is a challenging disease to diagnose and treat effectively with five-year survival rates below 50%. Previous patient experience research in high-income countries highlighted common challenges and opportunities to improve survival and quality of life for women affected by ovarian cancer. However, no comparable data exist for low-and middle-income countries, where 70% of women with the disease live. This study aims to address this evidence gap. METHODS: This is an observational multi-country study set in low- and middle-income countries. We aim to recruit over 2000 women diagnosed with ovarian cancer across multiple hospitals in 24 countries in Asia, Africa and South America. Country sample sizes have been calculated (n = 70-96 participants /country), taking account of varying national five-year disease prevalence rates. Women within five years of their diagnosis, who are in contact with participating hospitals, are invited to take part in the study. A questionnaire has been adapted from a tool previously used in high-income countries. It comprises 57 multiple choice and two open-ended questions designed to collect information on demographics, women's knowledge of ovarian cancer, route to diagnosis, access to treatments, surgery and genetic testing, support needs, the impact of the disease on women and their families, and their priorities for action. The questionnaire has been designed in English, translated into local languages and tested according to local ethics requirements. Questionnaires will be administered by a trained member of the clinical team. CONCLUSION: This study will inform further research, advocacy, and action in low- and middle-income countries based on tailored approaches to the national, regional and global challenges and opportunities. In addition, participating countries can choose to repeat the study to track progress and the protocol can be adapted for other countries and other diseases.

Demographic Variation in Health Insurance Coverage:United States, 2022.

Objectives-This report presents national estimates of different types of health insurance coverage and lack of coverage (uninsured). Estimates are presented by selected sociodemographic characteristics, including age, sex, race and Hispanic origin, family income, education level, employment status, and marital status. Methods-Data from the 2022 National Health Interview Survey were used to estimate health insurance coverage. Estimates were categorized by selected sociodemographic characteristics. Additionally, those who were uninsured were categorized by length of time since they had coverage, private coverage was further classified by source of plan, and public coverage was categorized by type of public plan. Results-In 2022, 28.1 million (8.6%) people of all ages were uninsured at the time of the interview. This includes 27.7 million (10.2%) people younger than age 65. Among children, 3.0 million (4.2%) were uninsured, and among working-age adults (ages 18-64), 24.7 million (12.4%) were uninsured. Among people younger than age 65, 64.0% were covered by private health insurance, including 56.0% with employment-based coverage and 6.8% with directly purchased coverage. Moreover, 4.5% were covered by exchange-based coverage, a type of directly purchased coverage. Among people younger than age 65, about two in five children and one in five adults ages 18-64 had public health coverage, mainly Medicaid and the Children's Health Insurance Program. Among adults age 65 and older, the percentage who were covered by private health insurance (with or without Medicare), Medicare Advantage, and traditional Medicare only varied by age, family income, education level, and race and Hispanic origin.

Problems Paying Medical Bills: United States, 2021.

Objective-This report presents national estimates of people living in families having problems paying medical bills by selected sociodemographic and geographic characteristics, including sex, race and Hispanic origin, family income, health insurance coverage status, education level, urbanization level, region, and state Medicaid expansion status.

Financial Burden of Medical Care Among Veterans Aged 25-64, by Health Insurance Coverage:United States, 2019-2021.

Objective-In addition to health insurance coverage options available to the general population, veterans may have access to Tricare, a healthcare program for uniformed services members and retirees, and U.S. Department of Veterans Affairs (VA) health care. This report measures the financial burden of medical care among veterans aged 25-64 and examines how that burden may vary by health insurance coverage.

Geographic Variation in Health Insurance Coverage:United States, 2022.

Objectives-This report presents state, regional, and national estimates of the percentage of people who were uninsured, had private health insurance coverage, and had public health insurance coverage at the time of the interview. Methods-Data from the 2022 National Health Interview Survey were used to estimate health insurance coverage. Estimates were categorized by age group, state Medicaid expansion status, urbanization level, expanded region, and state. Estimates by state Medicaid expansion status, urbanization level, and expanded region were based on data from all 50 states and the District of Columbia. State estimates are shown for 32 states and the District of Columbia for people younger than age 65 and adults ages 18-64, and 27 states for children. Results-In 2022, among people younger than age 65, 10.2% were uninsured, 64.0% had private coverage, and 28.2% had public coverage at the time of the interview. Among adults ages 18-64, the percentage who were uninsured ranged from 10.1% for those living in large fringe (suburban) metropolitan counties to 13.9% for both those living in nonmetropolitan counties and large central metropolitan counties. Adults ages 18-64 living in non-Medicaid expansion states were twice as likely to be uninsured (19.6%) compared with those living in Medicaid expansion states (9.1%). A similar pattern was observed among children ages 0-17 years. The percentage of adults ages 18-64 who were uninsured was significantly higher than the national average (12.4%) in Florida (17.9%), Georgia (21.2%), Tennessee (21.6%), and Texas (27.0%), and significantly lower than the national average in Maryland (7.0%), Massachusetts (3.0%), Michigan (6.5%), New York (5.6%), Ohio (8.6%), Pennsylvania (7.2%), Virginia (8.5%), Washington (7.3%), and Wisconsin (7.0%). The percentage of people younger than age 65 who were uninsured was lowest in the New England region (3.5%).

Characteristics of Adults Aged 18-64 Who Did Not Take Medication as Prescribed to Reduce Costs: United States, 2021.

About 60% of adults aged 18 and over reported taking at least one prescription medication in 2021, with 36% reporting taking three or more (1). Out-ofpocket costs on retail drugs rose 4.8% to $63 billion in 2021 (2). High costs may limit individuals' access to medications and lead to people not taking medication as prescribed (3,4); this may result in more serious illness and require additional treatment (5). This report examines the characteristics of adults aged 18-64 who took prescription medication in the past 12 months and did not take medication as prescribed due to cost. Cost-saving measures included skipping doses, taking less medication than prescribed, or delaying filling a prescription.

Influenza and Pneumococcal Vaccination Among Male Veterans and Nonveterans, 2016-2018.

OBJECTIVES: The Advisory Committee on Immunization Practices recommends persons aged ≥6 months receive an influenza vaccination annually, and certain adults aged ≥19 years receive the 23-valent pneumococcal polysaccharide vaccine alone or in series with the 13-valent pneumococcal conjugate vaccine, depending on age, chronic conditions, and smoking status. This study examines the prevalence of influenza and pneumococcal vaccination relative to Healthy People 2020 goals to understand how vaccination receipt differs by veteran status and sociodemographic subgroups. METHODS: We analyzed pooled data from the 2016-2018 National Health Interview Survey (N = 35 094) in 2021 to estimate the prevalence of influenza and pneumococcal vaccination for men aged 25-64 years and for men aged ≥65 years by veteran status and selected sociodemographic subgroups. We used 2-tailed t tests with an α = .05 to identify significant differences. RESULTS: Among men, 44.7% of veterans and 33.5% of nonveterans aged 25-64 years and 71.0% of veterans and 64.9% of nonveterans aged ≥65 years received an influenza vaccine in the past year. Among men aged 25-64 years at high risk for pneumococcal disease, 35.9% of veterans and 20.8% of nonveterans had ever received ≥1 dose of any pneumococcal vaccination. Disparities in the prevalence of vaccination within examined sociodemographic characteristics were often smaller in magnitude among veterans than among nonveterans for both vaccinations. CONCLUSIONS: Vaccination rates were below Healthy People 2020 targets for both groups, except influenza vaccination among veterans aged ≥65 years. Understanding differences in vaccine uptake may inform efforts to improve vaccination rates by identifying subgroups who are at high risk of disease and have low vaccination rates.

Summary health statistics for u.s. Children: national health interview survey, 2011.

Objectives-This report presents both age-adjusted and unadjusted statistics from the 2011 National Health Interview Survey (NHIS) on selected health measures for children under age 18 years, classified by sex, age, race, Hispanic origin, family structure, parent education, family income, poverty status, health insurance coverage, place of residence, region, and current health status. Topics included are asthma, allergies, learning disability, attention deficit hyperactivity disorder (ADHD), prescription medication use for at least 3 months, respondent-assessed health status, school days missed due to illness or injury, usual place of health care, time since last contact with a health care professional, selected measures of health care access, emergency room visits, and dental care. Data Source-NHIS is a multistage probability sample survey conducted annually by interviewers of the U.S. Census Bureau for the Centers for Disease Control and Prevention's National Center for Health Statistics and is representative of the civilian noninstitutionalized population of the United States. This report analyzes data from two of the main components of NHIS: the family core, in which data are collected for all family members by interviewing an adult family respondent, and the sample child core, in which additional health information is collected about a randomly selected child (the ''sample child'') from an adult proxy familiar with the child's health. Selected Highlights-In 2011, most U.S. children under age 18 years had excellent or very good health (83%). However, 7% of children had no health insurance coverage, and 3% of children had no usual place of health care. Six percent of children had unmet dental need because their families could not afford dental care. Fourteen percent of children had ever been diagnosed with asthma. An estimated 8% of children aged 3-17 had a learning disability, and an estimated 9% of children had ADHD.

Oral health status and access to oral health care for U.S. adults aged 18-64: National Health Interview Survey, 2008.

OBJECTIVES: This report presents statistics from the 2008 National Health Interview Survey (NHIS) on selected measures of oral health status and oral health care access for adults aged 18-64. Estimates are presented by sex, age, race and ethnicity, nativity, education, poverty status, health and dental insurance status, region, place of residence, dentition status, current smoking status, current drinking status, and diabetes status. DATA SOURCE: NHIS is a multistage probability sample survey conducted annually by interviewers of the U.S. Census Bureau for the Centers for Disease Control and Prevention's National Center for Health Statistics, and is representative of the civilian noninstitutionalized population of the United States. Data are collected for all family members during face-to-face interviews with adults present at the time of interview. Additional health information is obtained from one randomly selected adult. If the selected adult is physically or mentally incapable of responding for himself or herself, a proxy respondent is used. SELECTED HIGHLIGHTS: Among adults aged 18-64, about three-quarters had very good or good oral health, 17% had fair oral health, and 7% had poor oral health. Adults with Medicaid were almost five times as likely as adults with private health insurance to have poor oral health. Adults with Medicaid (21%) were almost twice as likely as adults overall (12%) to not have had a dental visit in more than 5 years. Among adults aged 18-64, the main reason to forgo a dental visit for an oral health problem in the past 6 months was cost; 42% could not afford treatment or did not have insurance. Fear was the reason that 1 out of 10 adults did not visit the dentist for an oral health problem.

Physical, Speech, Rehabilitative, or Occupational Therapy Use Among Adults Aged 25-64, by Veteran Status: United States, 2019-2020.

The aim of physical, speech, rehabilitative, and occupational therapy is to restore health, independence, and quality of life by addressing a range of health-related conditions that limit people's abilities to perform functional activities in their daily lives (1). Because functional ability is closely related to participation in society, it is an important dimension of health (2). Veterans have greater prevalence of disability and chronic pain than nonveterans (2,3), which may limit functional abilities. This report describes the use of physical, speech, rehabilitative, or occupational therapy in the past 12 months by veteran status and selected sociodemographic characteristics among adults aged 25-64.

Geographic Variation in Health Insurance Coverage:United States, 2021.

Objective-This report presents state, regional, and national estimates of the percentage of people who were uninsured, had private health insurance coverage, and had public health insurance coverage at the time of the interview.

Demographic Variation in Health Insurance Coverage:United States, 2021.

Objective-This report presents national estimates of different types of health insurance coverage and lack of coverage (uninsured).Estimates are presented by selected sociodemographic characteristics, including age, sex, race and Hispanic origin, family income, education level, employment status, and marital status.

Dental Care Utilization Among Adults Aged 18-64: United States, 2019 and 2020.

Oral health is an essential component of overall health and well-being (1,2). Along with good oral hygiene, an important factor of oral health is regular dental care (3). However, about 35% of adults aged 18 and over did not have a dental visit in 2019 (4), and predictors such as age, race, sex, and socioeconomic status were associated with delayed dental care among adults in the United States (5). In 2020, many dental practices limited their hours and services in response to the COVID-19 pandemic (6,7). This report uses data from the 2019 and 2020 National Health Interview Survey (NHIS) to describe recent changes in the prevalence of dental visits among adults aged 18-64.