Self-Directed Home- and Community-Based Services Improve Outcomes for Family Caregivers: A Systematic Review.

BACKGROUND AND OBJECTIVES: Self-direction is an approach that allows older adults and people with disabilities to determine the home- and community-based services they receive, including the ability to hire caregivers of their choice. Self-direction has been shown to improve outcomes for the service recipients. The promotion of choice and control in self-direction may also affect family caregivers. We conducted a systematic review examining the impact of self-direction on a broad range of caregiver outcomes. RESEARCH DESIGN AND METHODS: We conducted a systematic review guided by PRISMA guidelines. Literature search was conducted in 8 databases. We appraised risk of bias using the Joanna Briggs Institute critical appraisal checklists and assessed certainty of evidence using the GRADE framework. RESULTS: Sixteen studies meeting inclusion criteria were included. We found, with moderate certainty, that self-direction is associated with improved caregivers' personal and social well-being. Caregivers also reported reduced unmet needs and increased access to care for the care recipients under self-direction. Self-direction did not appear to reduce caregiving hours. With less certainty, self-direction was also positively associated with increased respite care use, perception of choice, and intention to continue caregiving by caregivers. DISCUSSION AND IMPLICATIONS: Beyond delivering person-centered services that improve recipient outcomes, self-direction may also improve the outcomes of family caregivers.

Housing and Long-Term Services and Supports for People With Intellectual or Developmental Disabilities From Racially and Culturally Minoritized Communities.

This article describes research on the places people with intellectual and developmental disabilities (IDD) live and disparities in housing and long-term services and supports (LTSS) outcomes for people with IDD from racially and culturally minoritized groups. It also summarizes the conclusions and recommendations of the Housing and Long-Term Services and Supports strand of the 2022 State of the Science Conference on the Intersection of Diversity, Equity and Inclusion and Supports and Services for People with IDD, identifies limitations of the available research and recommends strategies to improve research, knowledge translation, and practices.

Outcomes of Person-Centered Planning in Medicaid Home- and Community-Based Services.

BACKGROUND AND OBJECTIVES: Person-centered planning (PCP) allows recipients of home- and community-based service (HCBS) to plan services and supports according to their preferences and needs. The extent to which HCBS systems engage in PCP and evidence for the relationship between PCP and beneficiary outcomes are limited. We examine the prevalence of PCP among HCBS recipients and the relationship between PCP and person-reported outcomes. RESEARCH DESIGN AND METHODS: We used the 2018-2019 National Core Indicators-Aging and Disability survey, collected among adult Medicaid HCBS recipients in 12 states (n = 5,849). We examined 2 general PCP measures (1 on decision making and another on whether service plans reflected preferences/choices). We also constructed a scale to assess the fidelity of recipients' service planning meeting to the PCP process. Outcomes included unmet service needs and community living (i.e., participation, control, and satisfaction). We examined recipient characteristics associated with PCP and used adjusted logistic regression models to assess the relationship between PCP and outcomes. RESULTS: About 72% of HCBS recipients were involved in decision making, 72% reported their service plan reflected their preferences/choices, and 47% had meetings that scored "high fidelity" on the PCP fidelity scale. PCP measures were consistently related to lower likelihood of unmet service needs and greater likelihood of experiencing community living outcomes. DISCUSSION AND IMPLICATIONS: Findings suggest PCP is important for adequately meeting service needs and ensuring community living among HCBS beneficiaries. Additional standardized measures should be developed to facilitate quality improvement and accountability for delivering person-centered HCBS.

Facilitators and barriers to person-centered planning from the perspectives of individuals receiving medicaid home and community-based services and care managers.

BACKGROUND: While person-centered planning is required within Medicaid Home and Community-Based Services (HCBS) programs, we know little about the extent to which it is being implemented and best approaches to measuring quality. OBJECTIVE: Our study explored the experiences of individuals receiving Medicaid HCBS and care managers facilitating person-centered planning in three states to learn from their perspectives of facilitators and barriers. METHODS: We partnered with a national health plan and affiliated health plans in three states for recruitment. We used a semi-structured interview guide to conduct remote interviews with 13 individuals receiving HCBS and 31 care managers. To triangulate our findings, we reviewed assessment instruments from the three states and the person-centered care plans of HCBS recipients. RESULTS: From the perspectives of individuals receiving HCBS, facilitators to person-centered planning included: choice and control, personal goals and strengths, and relational communication. Care managers similarly identified the importance of relational communication, but also identified the development of measurable goals. Barriers from the perspectives of individuals receiving HCBS included: medical orientation of care plan, administrative and systemic barriers, and competencies of care managers. Care managers similarly identified administrative and systemic barriers. CONCLUSIONS: This exploratory study provides important perspectives on implementation of person-centered planning. Findings can help inform improvements in policy and practice, as well as guide future directions in quality measure development and assessment.

Excess Deaths Of Medicaid Home And Community-Based Services Recipients During COVID-19.

Using health plan data, we calculated excess mortality rates for Medicaid home and community-based services recipients during March-December 2020. For younger recipients, excess mortality was 7.4 times that of other community-dwelling Medicaid beneficiaries and 26.6 times that of the general population. As a proportion of expected mortality, excess mortality rates for older recipients and nursing home residents were comparable.

Advancing Policy and Practice in Medicaid Home and Community-Based Services Quality.

This policy brief highlights recent developments and future directions in the Medicaid Home and Community Based Services (HCBS) quality policy and practice within the US. Background is provided about the structure of Medicaid HCBS within the US, the changing landscape of payment and service delivery, and implications for HCBS quality measurement and use. An overview of a HCBS quality framework is provided that was developed with stakeholder input. Frequently used survey tools, existing quality measures, and measure development are discussed. Actionable recommendations are made, including establishment of stakeholder input mechanisms, enhanced federal guidance on a core set of measures, improved data collection and stratification to address equity, multiple mechanisms to assess quality, and increased federal investment in HCBS quality infrastructure.

Experiences of individuals self-directing Medicaid Home and Community-Based Services during COVID-19.

BACKGROUND: In response to COVID-19, many state Medicaid Home and Community-Based Services (HCBS) programs increased flexibilities and options for self-direction. OBJECTIVE: Our study sought to investigate the experiences of individuals self-directing during COVID-19. In particular we explored the following areas: 1) How have individuals maintained access to HCBS and workers?; 2) how have individuals maintained safety against COVID-19?; and 3) how have individuals maintained their health and well-being? METHODS: We partnered with community-based and national disability organizations for recruitment. We used a semi-structured interview guide to conduct remote interviews with 36 individuals from eleven states. The sample was diverse with regard to age, race/ethnicity, gender, and disability type. RESULTS: Three main themes emerged related to maintaining access to HCBS and direct care workers: 1) Benefits of authority to hire and fire; 2) benefits of ability to hire family members; and 3) fluctuations in needs and availability of workers. Two themes emerged related to maintaining safety against COVID-19: 1) Strategies for staying safe with workers; and 2) barriers in public health and service system response. Three themes emerged related to maintaining health and well-being: 1) Barriers to basic needs; 2) delaying needed care; and 3) use of telehealth and technology. CONCLUSIONS: This study was among the first to examine the experiences of individuals self-directing their HCBS during COVID-19. The flexibility of the model provided many benefits, which have implications for future policy and practice. Findings also highlight barriers in maintaining health and well-being during COVID-19, illustrating the importance of planning for future public health emergencies.

Mapping Nurse Practitioners' Scope of Practice Laws: A Resource for Evaluating Pre-Exposure Prophylaxis Prescriptions.

Context: Reducing the number of new HIV infections will require addressing barriers to HIV pre-exposure prophylaxis (PrEP) access and uptake. Nurse practitioners (NPs) may help increase PrEP access and uptake. State scope of practice laws determines NPs' ability to work independently and their authority to prescribe PrEP, a legend nonscheduled medication. Methods: This analysis applied legal epidemiology methods to analyze the laws of the 50 states and the District of Columbia that govern NPs' scope of practice as they may apply to prescribing legend nonscheduled medications. These laws were extracted from Westlaw Next between April and June 2019. Results: As of June 8, 2019, 17 states had laws that allowed NPs to both practice independently and prescribe legend nonscheduled drugs without restriction. Conclusion: The role that state scope of practice laws plays in potentially limiting NPs' ability to prescribe PrEP should be considered. Increasing PrEP access and uptake is essential in reaching national HIV prevention goals. This analysis can inform further studies and polices on barriers to PrEP access and uptake.

The relationship between unmet need for home and community-based services and health and community living outcomes.

BACKGROUND: Few studies have examined user-reported perspectives about the quality and sufficiency of home and community-based services (HCBS) and their relationship to key health and community living outcomes. OBJECTIVE: To examine the association between unmet need for HCBS and health and community living outcomes in a multi-state, multi-program sample of Medicaid HCBS users. METHODS: We used data from the 2017-2018 National Core Indicators-Aging and Disability (NCI-AD) survey, collected among older adults and adults with physical disabilities who were receiving Medicaid HCBS across 13 states (N = 10,263). We conducted descriptive analysis on the demographic, functional, and health characteristics of the sample, and examined the prevalence of unmet need for HCBS across five domains: 1) assistance with daily activities, 2) assistive technology, 3) home modifications, 4) transportation, and 5) sufficiency of services for meeting user needs and goals. We used logistic regressions to estimate adjusted odds ratios for the association between unmet need for HCBS and health care utilization (ED visits, hospital/rehab stays, preventative care) and community living outcomes (active in the community, interacting with family/friends, satisfaction, control). RESULTS: Across the five domains, prevalence of unmet need ranged from 21% (unmet need for assistance with self-care or other daily activities) to 54% (unmet need for assistive technology). Individuals who experienced unmet need had consistently worse health and community living outcomes than those who reported no unmet need, after adjusting for key user demographic, functional, and social characteristics (p < 0.05). CONCLUSIONS: Unmet need for HCBS is consistently and significantly associated with poor health and community living outcomes among Medicaid users.

Effect of CDC 2006 Revised HIV Testing Recommendations for Adults, Adolescents, Pregnant Women, and Newborns on State Laws, 2018.

In 2006, the Centers for Disease Control and Prevention updated its recommendations for HIV testing of 4 population groups in health care settings: adults, adolescents, pregnant women, and newborns. Important components of the revised recommendations included opt-out routine HIV screening; eliminating prevention counseling for opt-out routine HIV screening; repeat HIV testing in the third trimester for all women at high risk for acquiring HIV and for women receiving health care in facilities and/or jurisdictions with high HIV burden; testing during labor and delivery for women with undocumented HIV status; and testing the newborn when the mother's HIV status is unknown. To assess the integration of these testing recommendations into state laws and to inform future recommendations, we researched and assessed statutes and regulations that addressed HIV testing in the 4 population groups in all 50 states and the District of Columbia in 2018. We then classified the laws, based on their consistency with the recommendations for each of the 4 population groups. Of 31 states and the District of Columbia that had relevant laws, all addressed at least 1 component of the recommendations. Although no state had laws that incorporated all the recommendations for all the population groups, 5 states (Delaware, Illinois, Louisiana, Maryland, and New Hampshire) had incorporated all the recommendations for adults and adolescents, and 4 states (Connecticut, Nevada, North Carolina, and West Virginia) had incorporated all the recommendations for pregnant women and newborns.

Chronic peritoneal indwelling catheters for the management of malignant and nonmalignant ascites.

Ascites is a debilitating condition affecting patients with end-stage liver disease and advanced abdominal malignancies. Serial paracentesis can reduce symptoms in these patients; indwelling peritoneal catheters provide an alternative approach that allows patients to manage their symptoms at home. A literature search was conducted to identify studies with at least 20 patients published in the last 15 years that reported indwelling catheter placement in patients with chronic ascites. Fourteen studies with 957 patients (687 with malignancy and 270 with cirrhosis) were reviewed. Symptom improvement was reported in all studies. The most common complication in patients with malignant ascites was catheter dysfunction (39/687). Infection rates for patients with malignancy and patients with nonmalignant ascites were 5.4% (37/687) and 12.2% (33/270), respectively. Infection risk significantly increased with devices in place for >12 weeks. The average survival time after catheter placement was 7.2 weeks for patients with malignancy and 164 weeks for patients without malignancy. In conclusion, indwelling peritoneal catheters are an effective alternative to paracentesis for palliation in patients with refractory ascites. Peritonitis is a definite risk in patients with nonmalignant ascites in whom prolonged use is expected.

Evaluation of embolic protection devices for fat emboli prevention.

BACKGROUND: Patients with acutely treated femoral shaft fractures with reamed intramedullary nailing are at risk for acute respiratory distress syndrome due to liberation of bone marrow fat particles that travel to the lung and cause damage to the parenchyma. The purpose of this study was to demonstrate: (1) the ability of clinically applicable embolic protection devices to capture such particles; (2) how such a device affects cardiopulmonary function after reamed intramedullary nailing; and (3) evaluation of lung pathology to determine whether filtration affects pulmonary embolic load. METHODS: A total of 12 canines were anesthetized, and hemodynamic monitoring was established. Carotid embolic protection devices were introduced into the iliac vein, and ipsilateral intramedullary reaming and nailing was performed. Cardiopulmonary parameters were recorded at timed intervals up to 60 minutes after the procedure. The control group (n = 4) was compared with groups treated with Accunet (n = 4) and Spider (n = 4) filters. A blinded histopathological review was performed on lung specimens to determine the average number of emboli per section and to measure the area (mm(2)) of embolic load by digital image analysis. RESULTS: Gross inspection of the embolic protection devices showed the presence of bone marrow debris. A significant change was observed in pH levels (control = -0.052, filters = +0.005; P < .05) within the 60 minutes after intramedullary nailing. Serum bicarbonate (meq/dL) values were noted to have similar changes of -2.7 and -1.8 at 10 and 60 minutes, whereas the experimental group was +0.6 and +0.8 at the same time intervals (P =.01 and .0004, respectively). Pulmonary measurements for pO2 and oxygen saturation were analogous to the serum parameters with decreases in the control group in comparison with the filter groups. The mean numbers of emboli and area measurements of embolic load were significantly reduced in the filter group (all P < .01). CONCLUSIONS: Embolic protection devices were effective in capturing embolic debris from reamed intramedullary nailing of lower extremity long bones and demonstrated a protective effect on pulmonary function and significantly decreased the number and size of emboli in the lung. Based on these findings, patients with long bone fractures at risk for pulmonary complications and acute respiratory distress syndrome could benefit from the placement of embolic protection devices prior to intramedullary fixation. While this study utilized filtration devices designed for carotid embolic protection, further study is warranted to determine optimal filter design in this setting.

ACAM2000 clonal Vero cell culture vaccinia virus (New York City Board of Health strain)--a second-generation smallpox vaccine for biological defense.

The threat of smallpox as a biological weapon has spurred efforts to create stockpiles of vaccine for emergency preparedness. In lieu of preparing vaccine in animal skin (the original method), we cloned vaccinia virus (New York City Board of Health strain, Dryvax by plaque purification and amplified the clone in cell culture. The overarching goal was to produce a modern vaccine that was equivalent to the currently licensed Dryvax in its preclinical and clinical properties, and could thus reliably protect humans against smallpox. A variety of clones were evaluated, and many were unacceptably virulent in animal models. One clonal virus (ACAM1000) was selected and produced at clinical grade in MRC-5 human diploid cells. ACAM1000 was comparable to Dryvax in immunogenicity and protective activity but was less neurovirulent for mice and nonhuman primates. To meet requirements for large quantities of vaccine after the events of September 11th 2001, the ACAM1000 master virus seed was used to prepare vaccine (designated ACAM2000) at large scale in Vero cells under serum-free conditions. The genomes of ACAM1000 and ACAM2000 had identical nucleotide sequences, and the vaccines had comparable biological phenotypes. ACAM1000 and ACAM2000 were evaluated in three Phase 1 clinical trials. The vaccines produced major cutaneous reactions and evoked neutralizing antibody and cell-mediated immune responses in the vast majority of subjects and had a reactogenicity profile similar to that of Dryvax.