Publications

Abstract

Background: Forty-five percent of hospice patients currently have a primary or secondary diagnosis of Alzheimer’s disease or related disorders. However, few programs have focused specifically on assisting hospices in providing evidence-based symptom management to persons living with dementia (PLWD). Objective: To adapt and pilot the training component of Aliviado Dementia Care, a dementia symptom management quality improvement program originally developed for home healthcare, for use by social workers as part of the hospice interdisciplinary team. Design: A prospective pre-post design was utilized, measuring knowledge, confidence, and attitudes at baseline, and immediately and 1-month post-training. Analysis was performed using paired t-tests and repeated measures ANOVA. Subjects: Hospice social workers currently practicing in the United States with at least 1 year of experience. Measurements: The Dementia Symptom Knowledge Assessment and a post-training continuing education evaluation form. Results: Forty-six subjects were enrolled, of whom 26 completed the first post-test and 23 both post-tests. There was a poor baseline level of knowledge and confidence in caring for PLWD. Significant improvements occurred following training, particularly in implementing non-pharmacologic interventions for behavioral and psychological symptoms of dementia (BPSD) (16.64% increase, p <.0001) and confidence in managing behavioral symptoms (16.86%, p =.01) and depression (25.18%, p <.0001). Changes were maintained over time. All respondents were either very satisfied or satisfied with the quality and content of the program. Conclusions: The training modules of Aliviado Dementia Care were successfully tailored for use by hospice social workers, showing significant improvement in knowledge and confidence in caring for behavioral symptoms in PLWD. Future work will examine whether the larger program, including this training, can subsequently improve patient outcomes in hospice.

Abstract

Objectives: To examine how immigrant status and family relationships are associated with advance care planning (ACP) engagement and end-of-life (EOL) preference in burial planning among older Chinese Americans, the largest subgroup of Asian Americans. Design: Cross-sectional survey. Setting: Communities in Honolulu, Hawai'i. Participants: Participants were 430 older Chinese Americans aged 55 years and older. Measures: Measures included ACP contemplation, ACP discussion, and EOL preference in burial planning, immigrant status, family cohesion, family conflict, demographic information, and health status. Results: Results show that in comparison to foreign-born Chinese Americans, US-born Chinese Americans were more likely to have ACP contemplation [odds ratio (OR) 2.80, 95% confidence interval (CI) 1.39-5.63], ACP discussion (OR 3.02, 95% CI 1.50-6.08), and preferences for burial plans at the end of life (OR 4.56, 95% CI 2.04-10.18). Family conflict increased the possibility of having ACP contemplation (OR 1.21, 95% CI 1.07-1.38), ACP discussion (OR 1.22, 95% CI 1.07-1.39), and EOL preference in burial planning (OR 1.22, 95% CI 1.04-1.42), whereas family cohesion was not associated with these study outcomes. Conclusions and Implications: This study suggests that ACP should be adapted to be more culturally appropriate, especially in a time of coronavirus and xenophobia, such as framing ACP as a tool to help families reduce stress while fulfilling filial obligations, in order to ensure equitable access to ACP.

Abstract

Context: Persons from underrepresented racial and ethnic groups experience disparities in access to and quality of palliative and end-of-life care. Objectives: To summarize and evaluate existing palliative and end-of-life care interventions that aim to improve outcomes for racial and ethnic underrepresented populations in the United States. Methods: We conducted a systematic review of the literature in the English language from four databases through January 2020. Peer-reviewed studies that implemented interventions on palliative care, advance care planning, or end-of-life care were considered eligible. Data were extracted from 16 articles using pre-specified inclusion and exclusion criteria. Quality was appraised using the modified Downs and Black tool for assessing risk of bias in quantitative studies. Results: Five studies were randomized controlled trials, and the remainder were quasi-experiments. Six studies targeted Latino/Hispanic Americans, five African Americans, and five, Asian or Pacific Islander Americans. The two randomized control trials reviewed and rated “very high” quality, found educational interventions to have significant positive effects on advance care planning and advance directive completion and engagement for underrepresented racial or ethnic groups. Conclusion: The effectiveness of advance care planning, end-of-life, and palliative care interventions in improving outcomes for underrepresented racial and ethnic populations remains uncertain. Randomized controlled trials and educational interventions indicate that interventions targeting underrepresented groups can have significant and positive effects on advance directives and/or advance care planning-related outcomes. More high-quality intervention studies that address racial and ethnic health disparities in palliative care are needed, particularly those that address systemic racism and other complex multilevel factors that influence disparities in health.

Abstract

Objectives: To examine the factors of advance directive (AD) completion among older Chinese Americans. Design: Cross-sectional survey. Setting and Participants: Data came from 435 Chinese Americans aged 55 years and older living in 2 metropolitan areas through self-administered questionnaires and research assistant–administered interviews in 2018. Participants' average age was 75 years (standard deviation = 9.4). Methods: Logistic regression was used to examine factors associated with AD completion. Results: Approximately 14% of participants completed an AD. Older age [odds ratio (OR) 1.07, 95% confidence interval (CI) 1.02-1.12], higher level of acculturation (OR 2.15, 95% CI 1.39-3.33), higher expectation for intergenerational support (OR 1.52, 95% CI 1.02-2.27), and having US citizenship (OR 3.02, 95% CI 1.26-7.23) were positively associated with AD completion. Physical and mental health needs were not significantly associated with AD completion. Conclusions and Implications: This study is among the first focusing on AD completion among Chinese Americans, one of the fastest-growing older minority populations in the United States. Findings highlight the influence of socioeconomic and cultural factors on AD completion and illustrate the importance of developing culturally sensitive interventions to promote end-of-life care decision making among older Chinese Americans.

Abstract

Background: Little is known about advance directives (ADs) and end-of-life (EOL) care preferences among the general population in Mainland China. This study aimed to describe knowledge and attitudes of ADs and EOL care preferences, and to explore factors related to preferences for ADs among Chinese adults. Methods: The sample included 1114 adult participants in Wuhan, Mainland China. A brief message including the link to the online survey was sent to local residents who were registered at household registration management centers in Wuhan. The questionnaire included information regarding demographics, self-rated health, views on ADs and EOL care. Bivariate analyses and binary forward logistic regression were conducted to examine factors related to ADs preferences of Chinese adults. Results: The average age of the sample was 48.0 years and more than half of the sample was female. 81.8% had never heard of ADs, but 86.6% indicated that they might create one after learning what ADs were. 58% would choose hospice care if they were terminally ill whereas 48.7% of the participants wanted to die at home. 92.3% would want to know their diagnosis and prognosis if ill; however, if their family members were diagnosed with an incurable disease, 50.5% would not tell their ill family member the actual diagnosis and prognosis. Those who had heard of ADs (OR = 1.567, p < 0.001), earned an associate’s degree (OR = 2.448, p < 0.001) or a bachelor’s degree or higher (OR = 2.382, p < 0.001), and self-rated their health as very poor/poor (OR = 1.002, p = 0.001) were more likely to be willing to make an AD than their counterparts. However, those who were single (OR = 0.149, p < 0.001) or widowed /divorced/separated (OR = 0.405, p = 0.001) were less likely to be willing to make an AD than the married ones. Conclusions: Chinese adults showed positive attitudes towards ADs. There is an urgent need to promote more educational initiatives and raise awareness on the importance of ADs. It is important to develop more policies and legislation about ADs to improve the quality of EOL care in Mainland China.

Abstract

Objectives: This study addressed two questions: (1) Is age at migration associated with cognitive function among Chinese older immigrants? and (2) what personal and environmental factors confound the above relationship? Methods: Data were derived from the Population Study of Chinese Elderly (N = 2957). Quantile and linear regressions were used to examine the associations between age at migration and Mini-Mental State Examination (MMSE) and global cognitive function, respectively. Results: Migration in late middle age (50–64) or late adulthood (65 or older) was associated with lower MMSE scores. Global cognition did not vary by age at migration. Associations between age at migration and MMSE were stronger among individuals with lower education or social engagement. Discussion: Migrating late in one’s life has important implications for cognitive health over the life course. Findings are helpful to identify vulnerable older immigrant segments and provide tailored interventions to promote their cognitive health.

Abstract

Objectives: The ideal clinical model to deliver palliative care to patients with advanced kidney disease is currently unknown. Internationally, ambulatory kidney palliative care clinics have emerged with positive outcomes, yet there is limited data from the United States (US). In this exploratory study we report perceptions of a US-based ambulatory kidney palliative care clinic from the perspective of patient and caregiver attendees. The objective of this study was to inform further improvement of our clinical program. Methods: Semi-structured interviews were conducted to elicit the patient and caregiver experience. Eleven interviews (8 patients with chronic kidney disease stage IV or V and 3 caregivers) were analyzed using qualitative description design. Results: We identified 2 themes: “Communication addressing the emotional and physical aspects of disease” and “Filling gaps in care”; Subthemes include perceived value in symptom management, assistance with coping with disease, engagement in advance care planning, program satisfaction and patient activation. Significance of Results: Qualitative analysis showed that attendees of an ambulatory kidney palliative care clinic found the clinic enhanced the management of their kidney disease and provided services that filled current gaps in their care. Shared experiences highlight the significant challenges of life with kidney disease and the possible benefits of palliative care for this population. Further study to determine the optimal model of care for kidney palliative care is needed. Inclusion of the patient and caregiver perspective will be essential in this development.

Abstract

Background: Hypertrophic cardiomyopathy (HCM) is the most common inherited cardiac disorder globally, affecting 0.2% to 0.5% of individuals. Existing clinical HCM guidelines do not address diverse populations, specifically minority groups who often experience health disparities. Objective: The aim of this study was to describe the state of the science of HCM in black populations. Methods: This integrated review guided by Whittemore and Knafl's methodology included literature search of multiple databases, data evaluation, and analysis. Publications between 2000 and 2020 were included if they addressed HCM cardiac anatomic manifestations, disease course, symptoms, quality of life, or outcomes in black populations. Results: Six articles met the inclusion criteria. Overall, blacks are underrepresented in HCM research. Certain HCM structural phenotypes are more commonly exhibited in blacks, and physiology drives HCM treatment. Sudden death events and all-cause mortality do not differ between blacks and whites with HCM. Fewer blacks with HCM undergo genetic testing than whites with HCM. The lack of diversity in general genomic databases has resulted in reclassification of several genetic variants identified as more common in blacks. Conclusions: Blacks are underrepresented in HCM research, even those focused on elucidating HCM manifestations, disease course, and outcomes in black populations. This may be due in part to HCM research that is largely generated from specialty centers that can require patients to navigate complex healthcare systems to reach expert HCM care. Longitudinal studies with large samples of blacks with HCM are necessary to elucidate how HCM affects this population.

Abstract

Background: Fear of cancer recurrence (FCR) is the most prevalent need among breast cancer survivors. Age is the most consistent predictor of higher FCR, with prevalence rates as high as 70% among young adults. Although the association between age and higher FCR is well established, a more comprehensive understanding of the factors contributing to higher FCR among young adult breast cancer survivors is needed. Objective: The purpose of this integrative review was to explore the factors associated with higher FCR among young adult breast cancer survivors (≤ 45 years old). Methods: A literature search was conducted using PubMed, CINAHL, PsycINFO, and EMBASE databases with specific Medical Subject Headings terms delimited to FCR, diagnosis, sex, and age range. The initial search yielded 378 studies, 13 of which met the eligibility criteria. Results: Themes include motherhood status, health behaviors and decision making (eg, surveillance behaviors and surgical decision making), psychological morbidity, and social support. Cognitive behavioral factors include cognitive processing, metacognition, illness intrusiveness, and self-efficacy. Conclusion: Fear of cancer recurrence among young adult breast cancer survivors is a unique construct requiring further exploration and tailored interventions to improve the health-related quality of life for this population. Implications for Practice: Oncology nurses should screen all cancer survivors for FCR, with particular attention to the unique needs of young adults. Future research should address the role of age-appropriate support and increased levels of FCR during surveillance periods.

Abstract

Aim: The aim of this integrative review was to explore psychosocial vulnerabilities in women after a breast cancer diagnosis that are related to their paid work. Design: The review methodology was guided by Whittemore and Knafl. The Mehnert Cancer Survivorship and Work Model provided a lens through which to view vulnerability in working women with a focus on facilitating interventions to improve both recovery and work outcomes. Data Sources: PUBMED, CINAHL, Web of Science, and PsycNET databases were searched for English language papers published between January 2014–June 2020. Review Methods: Titles and abstracts were screened. Inclusion/exclusion criteria were then applied to full text screen of the remaining articles following PRISMA guidelines. Thirteen studies meeting the inclusion criteria were critically appraised using the Critical Appraisal Skills Programme (CASP) checklist. A constant comparison approach was used to systematically distil findings into categories and assess their fit within the Mehnert Model subdomains. Results: Vulnerabilities coalesced predominantly within the following subdomains: (a) changes in identity and role functioning; (b) social reintegration; (c) coping strategies; and (d) social supports. Patterns and themes within these subdomains were related both positively and negatively to form the contours of a survivor's satisfaction/dissatisfaction with quality of life related to work and breast cancer recovery. Conclusion: Overall, findings highlight the importance of employment and work environments in bolstering women's psychosocial health after a breast cancer diagnosis. Impact: Findings from this review support adapting psychosocial distress screening to include vulnerabilities relating to work life. Nurses are ideally positioned to facilitate this screening and engage clinicians in a dialogue surrounding patient's support needs due to nursing's central role on the interdisciplinary team. Nurses may also foster collective accountability for implementing ongoing multidisciplinary survivorship care plans that include a return to work component.

Abstract

The field of HIV research has grown over the past 40 years, but there remains an urgent need to address challenges that cisgender women living in the United States experience in the HIV neutral status care continuum, particularly among women such as Black women, who continue to be disproportionately burdened by HIV due to multiple levels of systemic oppression. We used a social ecological framework to provide a detailed review of the risk factors that drive the women's HIV epidemic. By presenting examples of effective approaches, best clinical practices, and identifying existing research gaps in three major categories (behavioral, biomedical, and structural), we provide an overview of the current state of research on HIV prevention among women. To illustrate a nursing viewpoint and take into account the diverse life experiences of women, we provide guidance to strengthen current HIV prevention programs. Future research should examine combined approaches for HIV prevention, and policies should be tailored to ensure that women receive effective services that are evidence-based and which they perceive as important to their lives.

Abstract

Disruptive forces are challenging the future of medicine. One of the key forces bringing change is the development of artificial intelligence (AI). AI is a technological system designed to perform tasks that are commonly associated with human intelligence and ability. Machine learning is a subset of AI, and deep learning is an aspect of machine learning. AI can be categorized as either applied or generalized. Machine learning is key to applied AI; it is dynamic and can become more accurate through processing different results. Other new technologies include blockchain, which allows for the storage of all of patients’ records to create a connected health ecosystem. Medical professionals ought to be willing to accept new technology, while also developing the skills that technology will not be able to replicate.

Abstract

Objective: Coronavirus disease 2019 (COVID-19) has disproportionately impacted nursing homes (NHs) with large shares of Black residents. We examined the associations between the proportion of Black residents in NHs and COVID-19 infections and deaths, accounting for structural bias (operationalized as county-level factors) and stratifying by urbanicity/rurality. Design: This was a cross-sectional observational cohort study using publicly available data from the LTCfocus, Centers for Disease Control and Prevention Long-Term Care Facility COVID-19 Module, and the NYTimes county-level COVID-19 database. Four multivariable linear regression models omitting and including facility characteristics, COVID-19 burden, and county-level fixed effects were estimated. Setting and Participants: In total, 11,587 US NHs that reported data on COVID-19 to the Centers for Disease Control and Prevention and had data in LTCfocus and NYTimes from January 20, 2020 through July 19, 2020. Measures: Proportion of Black residents in NHs (exposure); COVID-19 infections and deaths (main outcomes). Results: The proportion of Black residents in NHs were as follows: none= 3639 (31.4%), <20% = 1020 (8.8%), 20%-49.9% = 1586 (13.7%), ≥50% = 681 (5.9%), not reported = 4661 (40.2%). NHs with any Black residents showed significantly more COVID-19 infections and deaths than NHs with no Black residents. There were 13.6 percentage points more infections and 3.5 percentage points more deaths in NHs with ≥50% Black residents than in NHs with no Black residents (P <.001). Although facility characteristics explained some of the differences found in multivariable analyses, county-level factors and rurality explained more of the differences. Conclusions and Implications: It is likely that attributes of place, such as resources, services, and providers, important to equitable care and health outcomes are not readily available to counties where NHs have greater proportions of Black residents. Structural bias may underlie these inequities. It is imperative that support be provided to NHs that serve greater proportions of Black residents while considering the rurality of the NH setting.

Abstract

This study examined the association between childhood conditions and arthritis among middle-aged and older adults in China. The data were derived from the 2015 wave and the life-history module of the China Health and Retirement Longitudinal Study. Face-to-face interviews were conducted with respondents age 45 and over across China. Multiple imputation was used to handle the missing data, generating a final analytic sample of 19,800. Doctor-diagnosed arthritis was the main outcome variable. Random-effects logistic regression models were used to test the proposed models. Approximately 8 per cent of the respondents had better family financial status in childhood than their neighbours. Close to 8 per cent had been hospitalised or encountered similar conditions (e.g. confined to bed or home) for at least one month in childhood. Around one-third reported better subjective health in childhood than their peers. The majority of the respondents (80%) reported that they had stable health resources, and that their mothers were illiterate during their childhood. Childhood family financial status, subjective health, mother's education, access to health care and medical catastrophic events were found to be significant factors associated with arthritis in later life, after controlling for adulthood and older-age conditions (family financial status: odds ratio (OR) = 0.885, 95 per cent confidence interval (95% CI) = 0.848-0.924; subjective health: OR = 0.924, 95% CI = 0.889-0.960; mother's education: OR = 0.863, 95% CI = 0.750-0.992; access to health care: OR = 0.729, 95% CI = 0.552-0.964; medical catastrophic events: OR = 1.266, 95% CI = 1.108-1.446). The study results highlight an important role that childhood conditions play in affecting the onset of arthritis in late life in China. Health-care providers may consider childhood conditions as a valuable screening criterion to identify risk populations, which could be used to guide health promotion and prevention programmes, and promote healthy ageing.

Abstract

South Asians, who are at a disproportionately greater risk of atherosclerotic CVD (ASCVD), represent a rapidly growing population in the USA. The relationship between dairy products, a major component of South Asian diets, and body composition - an established risk factor for ASCVD, is unclear. The aim of the present study was to examine associations between dairy intake and multiple measures of body composition (BMI, waist and hip circumference, waist:hip ratio, abdominal lean mass, subcutaneous, visceral, and intermuscular fat areas) among South Asian adults in the USA. A baseline analysis was conducted using existing data from the Mediators of Atherosclerosis in South Asians Living in America cohort. In women, the highest (>1.9 servings/d) v. lowest (<1 serving/d) tertile of dairy intake was associated with 53 % lower odds of a waist circumference >80 cm (95 % CI 0.25, 0.89, P for trend<0.05). No associations were observed between dairy intake and measures of body composition. However, >3 servings of low-fat yogurt/week was associated with a 9.9 cmlower visceral fat area (95 % CI -19.07, -0.72, P<0.05) and 2.3 cmlower intermuscular fat area (95 % CI -3.76, -0.79, P<0.05) as compared with those with three servings/week. Milk and cheese were not associated with body composition measures. These analyses suggest that higher consumption of low-fat yogurt is associated with lower visceral and intermuscular fat in the whole sample, and women with higher dairy intake have lower waist circumference. Our study supports dietary incorporation of dairy products, and recognises the utility of multidimensional measures of central adiposity.

Abstract

To investigate the association of ownership status, discharge rate and length of stay (LOS) of home health care (HH) services under the prospective payment system (PPS). We used 2016–2018 Outcome Assessment and Information Set (OASIS) data sets for Medicare beneficiaries. Two outcome variables were investigated: rate of discharge from an HH agency and LOS. Our main independent variable was ownership status: for-profit (FP) versus not-for-profit (NFP). FP agencies were 4.2% (p <.01) less likely to discharge patients to the community but more likely (7.3%; p <.001) to have longer LOS (>99 days) compared to NFPs. Findings that FP agencies were less likely to discharge patients to the community and more likely to have a longer length of stay than NFP agencies have implications for quality of care initiatives by the Medicare Post-Acute Transformation Act 2014.

Abstract

Background: Socio-demographic transitions have dramatically changed the traditional family care settings in China, caused unmet care needs among older adults. However, whether different primary caregiver types have different influences on disabled older adults’ health outcomes remain poorly understood. We aimed to examine the association between the type of primary caregiver (e.g., spouse and children) and death among community-dwelling Chinese older adults disabled in activities of daily living. Methods: We used data from Chinese Longitudinal Healthy Longevity Survey. The analytic sample comprised 4278 eligible adults aged ≥ 80 years. We classified primary caregiver type into five categories: spouse, son/daughter-in-law, daughter/son-in-law, grandchildren, and domestic helper. We used Cox regression model to examine the association between primary caregiver type and all-cause mortality. Covariates included age, sex, residence, years of education, co-residence status, financial independence, whether living with children, number of ADL disability, number of chronic conditions, and self-reported health, cognitive impairment, and caregiving quality. Results: Married older adults whose primary caregivers were son/daughter-in-law had a 38% higher hazard of death than those who had spouse as the primary caregiver. Married men who received care primarily from son/daughter-in-law or daughter/son-in-law had a 64 and 68% higher hazard of death, respectively, than those whose primary caregiver was spouse. The association between primary caregiver type and mortality among widowed older adults differed between urban and rural areas. Urban residents who had domestic helpers as the primary caregiver had an 16% lower hazard of death, while those living in rural areas had a 50% higher hazard of death, than those having son/daughter-in-law as the primary caregiver. Conclusions: The quality of care of the primary caregiver may be a risk factor for mortality of disabled older adults in China. Interventions are necessary for reducing unmet needs and managing care burden.

Abstract

Objective: We hypothesized that infants with fetal growth restrictions have increased mortality and morbidity after congenital heart disease surgery. Methods: The study included patients in The Society of Thoracic Surgeons Congenital Heart Surgery Database (2010-2016) who underwent cardiac surgery at a corrected gestational age of ≤44 weeks. Patients were classified as severely (birth weight Z-score −4 to −2), moderately (Z-score −2 to −1), and mildly growth restricted (Z-score −1.0 to −0.5) and compared with a reference population (Z-score 0-0.5). Multivariable logistic regression clustering on center was used to evaluate the association of birth weight Z-score with operative mortality and postoperative complications and its interaction with gestational age was assessed. Results: In 25,244 patients, operative mortality was 8.6% and major complications occurred in 19.4%. Compared with the reference group, the adjusted odds ratio (AOR) of mortality was increased in infants with severe (AOR, 2.4; 95% confidence interval [CI], 2.0-3.0), moderate (AOR, 1.7; 95% CI, 1.4-2.0), and mild growth restriction (AOR, 1.4; 95% CI, 1.2-1.6). The AOR for major postoperative complications was increased for severe (AOR, 1.4; 95% CI, 1.2-1.7) and moderate growth restriction (AOR, 1.2; 95% CI, 1.1-1.4). There was significant interaction between birth weight Z-score and gestational age (P = .007). Conclusions: Even birth weight Z-scores slightly below average are independent risk factors for mortality and morbidity in infants who undergo cardiac surgery. The strongest association between poor fetal growth and operative mortality exists in early-term infants. These novel findings might account for some of the previously unexplained variation in cardiac surgical outcomes.