Burden of Wilson Disease among patients and care partners in the United States: results from a cross-sectional survey.

OBJECTIVE: This study assessed the burden of Wilson Disease (WD) among patients and care partners (WD-CPs) in the US and compared it to a US general population of adults (GPs) and care partners (GP-CPs). METHODS: This cross-sectional, self-reported survey included patients with WD and WD-CPs aged ≥18 years recruited through the Wilson Disease Association (WDA), while data for GPs and GP-CPs were obtained from the 2022 National Health and Wellness Survey. GPs and GP-CPs were propensity score matched (3:1) with WD patients and WD-CPs for demographics and health characteristics. Bivariate analysis evaluated differences in comorbidity burden and health-related outcomes of the WD cohorts compared to matched GP cohorts. RESULTS: Thirty-seven patients with WD and 53 WD-CPs completed the survey. Most patients reported some treatment burden (73.3%), experienced sleep problems (60%), and visited a healthcare provider (HCP) in the past 6 months (91.9%). Compared with matched GPs, patients with WD had a significantly higher mortality risk (p < .001) and reported greater rates of chronic liver disease, cirrhosis (both, p < .001), migraines (p = .032), non-alcoholic steatohepatitis (p = .004), sleep problems (p = .009) and HCP visits (p = .002). Most WD-CPs (75.5%) reported high burden of caring (mean ZBI-12 score, 26.5) and more negative impact on esteem than GP-CPs. CONCLUSION: This study highlights the burden of WD experienced by patients and WD-CPs, with patients experiencing high treatment burden, comorbidity burden and healthcare resource utilization, and WD-CPs experiencing high impact of caring, including impact on employment and self-esteem.

Wilson Disease (WD) is a rare genetic disorder that results from copper building up in the liver and the central nervous system. The management of WD has been consistent for the past 50 years. We surveyed patients with WD and family members of patients with WD ("care partners," hereby referred to as WD-CPs) residing in the US, to understand the burden of WD. We also used data from the 2022 National Health and Wellness Survey to compare patients with and WD-CPs to a sample of adults and care partners of adults in the general population (hereby referred to as GP and GP-CPs). The study found that the majority of the patients with WD reported some treatment burden (73.3%), experienced sleep problems (60.0%), and visited a healthcare provider (HCP) in the past 6 months (91.9%). Compared to GPs, patients with WD had a significantly higher risk of dying in the next 10 years and reported greater rates of other health conditions (chronic liver disease, cirrhosis, migraines, and non-alcoholic steatohepatitis), sleep problems, and visits to healthcare providers in the last 6 months. The majority of WD-CPs (75.5%) reported high burden of caring and more negative impact on their self-esteem than GP-CPs. Overall, this study highlights the burden of WD and suggests the need for more effective treatments that can reduce this burden.

The association between loneliness with health service use and quality of life among informal carers in Australia.

OBJECTIVE: The demanding nature of caregiving and limited social support can lead to informal carers experiencing loneliness, which can impact their well-being and overall health service use (HSU). The study aims to examine the association between loneliness with HSU and Health state utility values among informal carers in Australia. METHODS: Data were derived from three waves (2009, 2013, and 2017) of the nationally representative longitudinal Household Income and Labour Dynamics of Australia (HILDA) survey, focusing on adult informal carers. Outcome measures included visits to the General Practitioner, the number of hospital admissions, and the SF-6D score. Generalized Estimating Equations (GEE) analysis was conducted to explore the associations between loneliness and HSU, as well as loneliness and utility values (based on SF-6D) while adjusting for age, sex, education, marital status, income, and physical/mental health conditions. RESULTS: After controlling for covariates, lonely carers reported lower utility values (IRR = 0.91, 95%CI [0.89, 0.93], p < 0.001) compared to non-lonely carers. Lonely carers reported a higher number of GP visits (IRR = 1.18, 95% CI [1.04, 1.36], p < 0.05) as well as a higher likelihood of visiting specialists (AOR = 1.31, p = 0.046) and hospital doctors (AOR = 1.42, p = 0.013) compared to the non-lonely carers. CONCLUSIONS: The findings of this study highlight the relationship between loneliness on both healthcare utilization and carers' overall well-being. Addressing loneliness through targeted interventions and social support systems can help improve health outcomes and potentially reduce the overall healthcare costs among informal carers in Australia.

Patients' and Caregivers' Experiences Navigating the Burden of Atopic Dermatitis in Argentina.

Background and Objectives: Little is known about patients' and caregivers' experiences with atopic dermatitis (AD) in Argentina, so a survey was administered to learn more. Materials and Methods: A 53-item anonymous survey was administered in Spanish to adult AD patients (n = 334) and caregivers (n = 339) of pediatric AD patients in Argentina (total n = 673). Demographics, healthcare provider information, financial burden, disease severity, disease burden, level of disease-specific education, and experience with shared physician/patient decision making were collected. Linear and logistic regression models were used for statistical comparisons. Results: Survey respondents were overwhelmingly female (90.8%), as was the overall patient population (72.8%). Patients were seen mostly by healthcare specialists (66.8% dermatologists, 13.5% pediatricians, 7.7% allergists, and 7.2% general practitioners). Only 2.8% of respondents reported no symptoms, while 33.3%, 52.4%, and 11.5% reported mild, moderate, and severe AD disease, respectively. Anxiety/depression and pain/discomfort were the most impactful on respondents' quality of life. Caregivers of children with moderate to severe AD and adult patients with severe AD reported a significant financial burden, including using savings or not purchasing food or other essentials to afford medical care. Few people reported receiving disease-specific education or having their own treatment priorities taken into consideration. For adult patients, receiving disease education and being asked about treatment priorities were associated with higher treatment satisfaction and AD control. Discussion: Mental health, pain/discomfort, and financial worries are the most important burdens for adult AD patients and caregivers of children with AD in Argentina. We recommend prioritizing disease-specific education and shared decision making to improve AD care in Argentina.

The Natural History of Disability and Caregiving Before and After Long-Term Care Entry.

Importance: Many older persons move into long-term care facilities (LTCFs) due to disability and insufficient home caregiving options. However, the extent of disability and caregiving provided around the time of entry is unknown. Objective: To quantitatively describe disability and caregiving before and after LTCF entry, comparing nursing home (NH), assisted living (AL), and independent living (IL) entrants. Design, Setting, and Participants: A longitudinal cohort study using prospectively collected annual data from the National Health and Aging Trends Study from 2011 to 2020 including participants in the continental US. Overall, 932 community-dwelling Medicare beneficiaries entering LTCF from 2011 to 2019 were included. Entry into LTCF was set as t = 0, and participant interviews from 4 years before and 2 years after were used. Main Outcomes and Measures: Prevalence of severe disability (severe difficulty or dependence in ≥3 activities of daily living), prevalence of caregivers, and median weekly caregiving hours per entrant, using weighted mixed-effects regression against time as linear spline. Results: At entry, mean (SD) age was 84 (8.4) years, 609 (64%, all percentages survey weighted) were women, 143 (6%) were Black, 29 (3%) were Hispanic, 30 (4%) were other (other race and ethnicity included American Indian, Asian, Native Hawaiian, and other), and 497 (49%) had dementia. 349 (34%) entered NH, 426 (45%) entered AL, and 157 (21%) entered IL. Overall, NH and AL entry were preceded by months of severe disability and escalating caregiving. Before entry, 49% (95% CI, 29%-68%) of NH entrants and 10% (95% CI, 3%-24%) of AL entrants had severe disability. Most (>97%) had at least a caregiver, but only one-third (NH, 33%; 95% CI, 20%-50%; AL, 33%; 95% CI, 24%-44%) had a paid caregiver. Median care was 27 hours weekly (95% CI, 18-40) in NH entrants and 18 (95% CI, 14-24) in AL entrants. On NH and AL entry, severe disability rose to 89% (95% CI, 82%-94%) and 28% (95% CI, 16%-44%) on NH and AL entry and was 66% (95% CI, 55%-75%) 2 years after entry in AL residents. Few IL entrants (<2%) had severe disability and their median care remained less than 7 hours weekly before and after entry. Conclusions: This study found that persons often enter NHs and ALs after months of severe disability and substantial help at home, usually from unpaid caregivers. Assisted living residents move when less disabled, but approach levels of disability similar to NH entrants within 2 years. Data may help clinicians understand when home supports approach a breaking point.

Barriers and facilitators to integrating depression care in tuberculosis services in South Asia: a multi-country qualitative study.

BACKGROUND: Depression is common among people with tuberculosis (TB). The condition is typically unrecognised or untreated despite available and effective treatments in most low- and middle-income countries. TB services in these countries are relatively well established, offering a potential opportunity to deliver integrated depression screening and care. However, there is limited evidence on how such integration could be achieved. This study aimed to understand the barriers and facilitators to integrate depression care in TB services. METHODS: We conducted nine workshops with 76 study participants, including people with TB, their carers, and health service providers in Bangladesh, India, and Pakistan, seeking views on integrating depression care into TB clinics. We used a deductive thematic approach to analyse the translated transcripts of audio recordings, contemporaneous notes made during workshops for Bangladesh and India and workshop reports for Pakistan. Using the SURE (Supporting the Use of Research Evidence) thematic framework, we extracted and categorised barriers and facilitators into various domains. RESULTS: Reported barriers to integrating depression care in TB services included lack of knowledge about depression amongst patients and the staff, financial burden, and associated stigma for people with TB and their carers. Government buy-in and understanding of how to identify and screen for depression screening were potential facilitators reported. Additionally, breaking through mental health stigma and providing the additional resources required to deliver this service (human resources and consultation time) were essential for integrating depression and TB care. CONCLUSIONS: Depression is a common condition found among people with TB, requiring early identification among people with TB. Integrating depression care into Tb services by health workers requires the availability of political support and the provision of resources.

Racial and Ethnic Disparities in Chronic Stress among Male Caregivers.

Whereas research on caregiving is well documented, less is known about gender inequalities in caregiver stress, coping mechanisms, and health outcomes, all of which may vary by race, ethnicity, and socioeconomic status. This scoping review investigated racial and ethnic disparities using the Stress Process Model among male caregivers. Several databases were searched including Academic Search Premier, Medline Complete, APA PsycInfo, CINHAL, Google, ProQuest, and Web of Science. Included were peer-reviewed articles in English, published from 1990 to 2022. A total of nine articles fulfilled inclusion criteria. Most of the articles indicated that compared to White male caregivers, African American male caregivers provided more hours of care, assisted with more activities of daily living (ADLs) and instrumental activities of daily living (IADLs), and experienced more financial stress. In terms of coping style, one study found African American male caregivers, compared to White male caregivers, held negative religious beliefs. Another study showed that they were at a higher risk for stroke than their White counterparts. The search revealed a dearth of studies on racial disparities in stress, coping, and health outcomes among male caregivers. Further research is needed on the experiences and perspectives of male minority caregivers.

Safety Concerns for Persons with Dementia in Senior Housing: A Qualitative Study with Korean American Caregivers in Los Angeles.

Subsidized senior housing helps many socioeconomically disadvantaged older adults pursue independent living and aging in place. However, cognitive impairment or dementia poses a critical challenge to many residents' ability to live independently and safely. Focusing on Korean American dementia caregivers, a group known to be vulnerable to caregiving burden but understudied, we explored the safety of persons with dementia in senior housing from the perspectives of caregivers. Qualitative data from nine caregivers whose care recipients were current or former residents of subsidized senior housing in Los Angeles were analyzed by the constant comparative method. Major concerns emerged were: (1) fire risks, (2) wandering, (3) physical injury (e.g., self-harm, falls), and (4) potential neglect. Caregivers also mentioned errors in the self-administration of medications, potential financial exploitation, and interpersonal conflicts. These concerns provide implications for services and programs for the safety of persons with dementia who live in senior housing.

Perceived COVID-19 risk and testing experiences in the San Ysidro U.S./Mexico border region.

Racial and ethnic disparities in COVID-19 incidence are pronounced in underserved U.S./Mexico border communities. Working and living environments in these communities can lead to increased risk of COVID-19 infection and transmission, and this increased risk is exacerbated by lack of access to testing. As part of designing a community and culturally tailored COVID-19 testing program, we surveyed community members in the San Ysidro border region. The purpose of our study was to characterize knowledge, attitudes, and beliefs of prenatal patients, prenatal caregivers, and pediatric caregivers at a Federally Qualified Health Center (FHQC) in the San Ysidro region regarding perceived risk of COVID-19 infection and access to testing. A cross-sectional survey was used to collect information on experiences accessing COVID-19 testing and perceived risk of COVID-19 infection within San Ysidro between December 29, 2020 and April 2, 2021. A total of 179 surveys were analyzed. Most participants identified as female (85%) and as Mexican/Mexican American (75%). Over half (56%) were between the age of 25 and 34 years old. Perceived Risk: 37% reported moderate to high risk of COVID-19 infection, whereas 50% reported their risk low to none. Testing Experience: Approximately 68% reported previously being tested for COVID-19. Among those tested, 97% reported having very easy or easy access to testing. Reasons for not testing included limited appointment availability, cost, not feeling sick, and concern about risk of infection while at a testing facility. This study is an important first step to understand the COVID-19 risk perceptions and testing access among patients and community members living near the U.S./Mexico border in San Ysidro, California.

COVID-19 testing strategies that fail to incorporate culturally competent methods to reach traditionally underserved communities can lead to persistent transmission and increased infection rates. During the early stages of the COVID-19 pandemic, we surveyed 179 people living in a community with high burden of COVID-19 infection about their perception of infection risk and their experiences accessing testing. Capturing and understanding these community perceptions on COVID-19 risk are vital when developing a testing program that is accessible and appropriate for the target population. In our study, we found half of survey respondents thought their risk of COVID-19 infection as low to none and over half of respondents stated they had already been tested for COVID-19. These findings provide insight to the beliefs of individuals who live and seek health care in communities with high rates of COVID-19 infection and will help guide the design and implementation of culturally tailored testing strategies.

"Falling between the cracks": Experiences of Black dementia caregivers navigating U.S. health systems.

In addition to numerous care responsibilities, family caregivers are expected to navigate health systems and engage in healthcare management tasks on behalf of their persons living with dementia (PLWD). These challenging tasks pose additional difficulties for Black dementia caregivers. Due to the centuries-old, disadvantaged social history of Black Americans, several unique stressors, vulnerabilities, and resources have emerged which inform and affect Black dementia caregivers' experiences and well-being. Focus groups were held with Black caregivers (N = 19) from the United States to explore the unique experiences and perspectives of this population navigating the U.S. health system on behalf of their PLWD. Five overarching themes were constructed during thematic analysis: Forced Advocacy, Poor Provider Interaction, Payor Source Dictates Care, Discrimination, and Broken Health System. Black dementia caregivers unanimously concurred that the health system that they experience in America is "broken." Gaps in the health system can lead to people [as one caregiver passionately expressed] "falling between the cracks," in terms of care, services, and resources needed. Caregivers agreed that class, sex, utilizing public health insurance, and being a "person of color" contribute to their difficulties navigating the health system. Caregivers perceived being dismissed by providers, forcing them to advocate for both themselves and their PLWD. Healthcare providers and researchers can utilize these findings to improve the experiences and healthcare outcomes of Black persons living with dementia and their caregivers. Additionally, these findings can lead to the development of culturally tailored caregiver education programs.

Assessment of vaccination timeliness and associated factors among children in Toke Kutaye district, central Ethiopia: A Mixed study.

INTRODUCTION: Age inappropriate vaccination of children increases the rate of mortality and morbidity. All studies conducted in some areas of Ethiopia were only quantitative in nature and focused on the main cities ignoring rural communities. OBJECTIVE: The objective of this study is to assess vaccination timeliness and associated factors among children in Toke Kutaye district, central Ethiopia. METHODS: A community-based cross-sectional study with quantitative and qualitative data collection methods was used, for which simple random sampling was used to select 602 mothers/caregivers who have vaccinated children aged 12 to 23 months in the district. The collected data were entered into Epi-data version 3.1 and exported to SPSS version 23 for analysis. Bivariate analysis with a P-value of < 0.25 was used to select candidate variables for multivariate logistic regression. Adjusted odds ratio (AOR) with 95% CI and p-value < 0.05 were used to declare a significant association. Qualitative data responses were classified and then organized by content with thematic analysis. RESULTS: A total of 590 respondents responded to the interviews, making a response rate of 98%. In this study, 23.9% (95% CI: 20.4-27.7) of children aged 12-23 months had received all vaccines in the recommended time intervals. Urban residence (AOR: 3.15, 95% CI: 1.56-6.4), participation of pregnant women in conferences (AOR: 2.35, 95% CI: 1.2-4.57), institutional delivery (AOR: 2.5: 95% CI: 1.32-4.20), and sufficient knowledge of mothers (AOR: 3, 95% CI: 1.82-5.10) were significantly associated with the timeliness of childhood vaccination. Qualitative findings revealed that lack of knowledge and lack of information from mothers or caregivers, and inadequate communication with health workers hindered timely vaccination. CONCLUSION: The overall timeliness of the child's vaccination was low in this study. Residence, participation in a conference, place of delivery, and knowledge of the mothers were predictors of vaccination timeliness. Hence, promoting institutional delivery and increasing pregnant mothers awreness on vaccination timeliness through conference participation is compulsory.

Caregiving Burden Among Caregivers of People With Dementia Through the Lens of Intersectionality.

BACKGROUND AND OBJECTIVES: Caregivers may be at different risks of various types of burdens by virtue of their gender and racial/ethnic status. This article explores the differences in caregiving burdens across the intersectionality of race and gender. RESEARCH DESIGN AND METHODS: Using Round 5 (conducted in 2015) and Round 7 (conducted in 2017) of National Study of Caregiving and National Health and Aging Trends Study data, the study examined differences in caregiver burdens across and within different gender and racial/ethnic groups, within the realms of financial, emotional, and physical burdens. The sample consisted of 1,206 caregivers who provided services to Medicare beneficiaries. Logistic regressions were performed to assess the 3 types of burdens each subgroup was experiencing. RESULTS: Results indicated that within the intersectionality framework, compared to White female caregivers, Black male caregivers were 3.3 times (95% confidence interval [CI] 1.77-6.22) more likely to experience financial burden, and Black female caregivers were 54% less likely to experience physical burden. Surprisingly, compared to White female caregivers, all the other groups were 37% (95% CI 0.41-0.95) to 71% (95% CI 0.15-0.56) less likely to have emotional burden. DISCUSSION AND IMPLICATIONS: The findings highlighted that Black male caregivers are experiencing financial burden and White female caregivers are experiencing emotional burden disproportionately. To develop effective interventions and programs for dementia caregivers, a special focus should be put on monitoring the differences in the types of burdens that the above-mentioned population subgroups experience.

Social and Environmental Determinants of Health Among Family Caregivers of Older Adults.

BACKGROUND: Although the academic literature has focused on family caregivers' health outcomes, little is known about the social and environmental determinants of health and the extent to which they relate to health disparities among family caregivers caring for older adults. OBJECTIVES: The purpose of the study was to describe the prevalence of diseases and the association with social and environmental determinants of health among family caregivers caring for older adults in Finland. METHODS: A cross-sectional analysis was conducted. The study participants were interviewed on sociodemographic factors, comorbidity, and the World Health Organization Quality of Life Questionnaire. Independent-samples t-test, analysis of variance, and chi-square analyses were used to assess the social and environmental factors' association with health outcomes. RESULTS: A total of 126 family caregivers participated in this study. The mean age of study participants was 74.4 years, and most were female, married, and from an urban area. Family caregivers' older age and lower financial satisfaction were the main factors associated with the health inequalities. Older age was associated with age-related eye disorders, hearing impairment, coronary heart disease, and comorbidity. Family caregivers' lower financial satisfaction was associated with diabetes, depression, and higher body mass index. Other factors linked to health disparities were family caregivers' gender, educational attainment, and the municipality of living. DISCUSSION: This study provides evidence about family caregivers' social and environmental determinants of health. To enhance health equity, nurse-led interventions, a life course approach, and intersectional actions are required.

Prevalence and Characteristics of Subjective Cognitive Decline Among Unpaid Caregivers Aged ≥45 Years - 22 States, 2015-2019.

Approximately 20% of U.S. adults are unpaid caregivers (caregivers) (1) who provide support to a family member or friend with a health condition or disability. Although there are benefits to caregiving, it can negatively affect caregivers' physical and mental health (2-4). Much of the assistance caregivers provide, such as administering medications or financial management, relies on cognitive ability, but little is known about caregivers' cognitive functioning. Subjective cognitive decline (SCD), the self-reported experience of worsening or more frequent confusion or memory loss over the past year (5), could affect caregivers' risk for adverse health outcomes and affect the quality of care they provide. CDC analyzed SCD among caregivers aged ≥45 years through a cross-sectional analysis of data from 22 states in the 2015-2019 Behavioral Risk Factor Surveillance System (BRFSS). Among adults aged ≥45 years, SCD was reported by 12.6% of caregivers who provided care to a family member or friend with a health condition or disability in the past 30 days compared with 10.2% of noncaregivers (p<0.001). Caregivers with SCD were more likely to be employed, men, aged 45-64 years, and have chronic health conditions than were noncaregivers with SCD. Caregivers with SCD were more likely to report frequent mental distress, a history of depression, and frequent activity limitations than were caregivers without SCD. SCD among caregivers could adversely affect the quality of care provided to care recipients. Understanding caregivers' cognitive health and the types of care provided is critical to maintaining the health, well-being, and independence of the caregiving dyad. Health care professionals can support patients and their patients' caregivers by increasing awareness among caregivers of the need to monitor their own health. The health care team can work with caregivers to identify potential treatments and access supports that might help them in their caregiving role and compensate for SCD.

Cross-Sector Approach Expands Screening and Addresses Health-Related Social Needs in Primary Care.

OBJECTIVES: During infancy, the American Academy of Pediatrics Bright Futures fourth edition health supervision guidelines recommend frequent well-child visits (WCVs) in which providers are expected to screen for and address maternal depression, intimate partner violence (IPV), and health-related social needs (HRSN). We spread an evidence-based approach that implements these recommendations (Developmental Understanding and Legal Collaboration for Everyone; DULCE) with 3 aims for 6-month-old infants and their families: 75% receive all WCVs on time, 95% are screened for 7 HRSNs, and 90% of families with concrete supports needs and 75% of families with maternal depression or IPV receive support. METHODS: Between January 2017 and July 2018, five DULCE teams (including a community health worker, early childhood system representative, legal partner, clinic administrator, pediatric and behavioral health clinicians) from 3 communities in 2 states participated in a learning collaborative. Teams adapted DULCE using Plan-Do-Study-Act cycles, reported data, and shared learning monthly. Run charts were used to study measures. The main outcome was the percent of infants that received all WCVs on time. RESULTS: The percentage of families who completed all WCVs on time increased from 46% to 65%. More than 95% of families were screened for HRSNs, 70% had ≥1 positive screen, and 86% and 71% of those received resource information for concrete supports and maternal depression and IPV, respectively. CONCLUSIONS: Quality improvement-supported DULCE expansion increased by 50% the proportion of infants receiving all WCVs on time and reliably identified and addressed families' HRSNs, via integration of existing resources.

[Assessment of psycho-trauma caused by the aggressions committed by patients with psychosis against their family caregivers: across-sectional survey]. / Évaluation du psycho-traumatisme lié aux agressions commises par les patients psychotiques sur leurs aidants familiaux: enquête transversale dans la région de Sfax, Tunisie.

INTRODUCTION: the management of patients with psychosis is associated with a risk of exposure to violence which can affect all the stakeholders, in particular the family entourage. Caregiving role generates violence and this can have a psychological impact on the caregivers. The purpose of this study is to evaluate the prevalence of aggressions perpetrated by patients with psychosis on their family caregivers as well as to assess the psychological and traumatic impact on family caregivers and to identify factors associated with it. METHODS: family caregivers of patient with psychosis were interviewed. We used two psychometric scales: the perception of prevalence of aggression scale (POPAS) and the impact of event scale-revised. RESULTS: the whole number of participants was 95. Three out of four caregivers (75.8%) reported having been subjected to moderate to severe aggressions by their sick relatives during the past year. Moderate to severe aggressions were significantly more common among older male caregivers, parents of patients with psychosis living in a different home. Fifty-four point seven percent of caregivers had possible posttraumatic stress disorder (PTSD) and the risk of developing this disorder increased significantly as the perceived severity of aggressions increased. The same sociodemographic profile of the caregivers, related to the severity of the aggressions, was associated with a risk of developing PTSD in the caregivers. CONCLUSION: the aggressions committed by patients with psychosis against their family caregivers appear to have a significant psychological and traumatic impact. Interventions targeting violence committed by patients with psychosis in their family environment should also be integrated into patient management.

Long-term Occupational Consequences for Families of Children With Type 1 Diabetes: The Mothers Take the Burden.

OBJECTIVE: To investigate the occupational and financial consequences for parents following the onset of type 1 diabetes in their child. RESEARCH DESIGN AND METHODS: A questionnaire assessing occupational and financial situations before and in the first year after the onset of diabetes was distributed to all families with a child ≤14 years of age at diagnosis with a diabetes duration of at least 12 months in nine German pediatric diabetes centers. RESULTS: Data of 1,144 children (mean age at diagnosis 6.7 [3.6] years; 46.5% female) and their families were obtained. Mothers' occupational status reflected in paid working hours was significantly reduced in the first year after their child's diabetes diagnosis (P < 0.001). Overall, 15.1% of mothers stopped working, and 11.5% reduced working hours. Mothers of preschool children were particularly affected. Fathers' working status hardly changed (P = 0.75). Nearly half of the families (46.4%) reported moderate to severe financial losses. Compared with an earlier similar study in 2003, significant negative occupational consequences for mothers and financial burden on families remained unchanged in 2018 (P = 0.59 and 0.31, respectively). CONCLUSIONS: Mothers of young children with newly diagnosed diabetes experienced negative consequences in their occupational situation. This inequality for mothers can have long-term negative consequences for their mental health and future economic situation. There is an urgent need for action to reduce the burden on families and to provide professional, social, and regulatory support, especially for mothers of young children with diabetes.

Unintentional falls among children in rural Ghana and associated factors: a cluster-randomized, population-based household survey.

INTRODUCTION: falls contribute to almost one-fifth of injury-related deaths. The majority of these occur in low- and middle-income countries. The impact of fall injury in low- and middle-income countries is greater in younger individuals. We aimed to determine the epidemiology of falls among rural Ghanaian children. METHODS: from March to May, 2018, we conducted a cluster-randomized household survey of caregivers in a rural Ghanaian sub-district, regarding household child falls and their severity. We utilized a previously validated survey tool for household child injury. Associations between household child falls and previously described predictors of household child injury were examined with multivariable logistic regression. These included age and gender of the child, household socioeconomic status, caregiver education, employment status, and their beliefs on why household child injuries occur. RESULTS: three hundred and fifty-seven caregivers of 1,016 children were surveyed. One hundred and sixty-four children under 18 years had sustained a household fall within the past six months, giving a household child fall prevalence of 16% (95% C.I, 14%-19%). Mean age was 4.4 years; 59% were males. Ground level falls were more common (80%). Severity was mostly moderate (86%). Most caregivers believed household child injuries occurred due to lack of supervision (85%) or unsafe environment (75%); only 2% believed it occurred because of fate. Girls had reduced odds of household falls (adjusted O.R 0.6; 95% C.I 0.4-0.9). Five to nine year-old and 15-17 year-old children had reduced odds of household falls (adjusted O.R 0.4; 95% C.I 0.2-0.7 and 0.1; 95% C.I 0.02-0.3, respectively) compared to 1-4 year-olds. Caregiver engagement in non-salary paying work was associated with increased odds of household child falls (adjusted O.R 2.2; 95% C.I 1.0-4.7) compared to unemployed caregivers. There was no association between household child falls and caregiver education, socioeconomic status and beliefs about why household child injuries occurred. CONCLUSION: the prevalence of household child falls in rural Ghana was 16%. This study confirms the need to improve supervision of all children to reduce household falls, especially younger children and particularly boys. Majority of caregivers also acknowledge the role of improper child supervision and unsafe environments in household child falls. These beliefs should be reinforced and emphasized in campaigns to prevent household child falls in rural communities.

Socioeconomic status and the likelihood of informal care provision in Japan: An analysis considering survival probability of care recipients.

Studies show that the burden of caregiving tends to fall on individuals of low socioeconomic status (SES); however, the association between SES and the likelihood of caregiving has not yet been established. We studied the relationship between SES and the likelihood of adults providing long-term care for their parents in Japan, where compulsory public long-term insurance has been implemented. We used the following six comprehensive measures of SES for the analysis: income, financial assets, expenditure, living conditions, housing conditions, and education. We found that for some SES measures the probability of care provision for parents was greater in higher SES categories than in the lowest category, although the results were not systematically related to the order of SES categories or consistent across SES measures. The results did not change even after the difference in the probability of parents' survival according to SES was considered. Overall, we did not find evidence that individuals with lower SES were more likely to provide care to parents than higher-SES individuals. Although a negative association between SES and care burden has been repeatedly reported in terms of care intensity, the caregiving decision could be different in relation to SES. Further research is necessary to generalize the results.

The need to show minimum clinically important differences in Alzheimer's disease trials.

Deciding on the smallest change in an outcome that constitutes a clinically meaningful treatment effect (ie, the minimum clinically important difference [MCID]) is fundamental to interpreting clinical trial outcomes, making clinical decisions, and designing studies with sufficient statistical power to detect any such effect. There is no consensus on MCIDs for outcomes in Alzheimer's disease trials, but the US Food and Drug Administration's consideration of aducanumab clinical trials data has exposed the uncertainty of the clinical meaning of statistically significant but small improvements. Although MCIDs for outcomes, including Clinical Dementia Rating-Sum of Boxes and Mini-Mental State Examination in Alzheimer's disease have been reported, the Food and Drug Administration's guidelines, drafted in 1989 to facilitate regulatory approval of substantially effective antidementia drugs, do not specify quantified minimum differences. Although it is important that regulatory requirements encourage drug development and approval, without MCIDs, sponsors are motivated to power trials to detect statistical significance for only small and potentially inconsequential effects on clinical outcomes. MCIDs benefit patients, family members, caregivers, and health-care systems and should be incorporated into clinical trials and drug development guidance for Alzheimer's disease.