Development of a Health Insurance Navigation Program for Long-Term Childhood Cancer Survivors.

Adapting interventions to new contexts requires consideration of the needs, norms, and delivery structures of the new setting. We describe how we followed the ORBIT model of intervention development to create Health Insurance Navigation Tools (HINT), a health insurance patient navigation intervention for childhood cancer survivors. By engaging stakeholders and leveraging institutional resources, we identified and preemptively addressed real-world barriers, which may improve the feasibility and efficacy of the intervention. Using evidence-based implementation science models to adapt and refine interventions enhances rigor and reproducibility, implements checks and balances, and surmounts challenges of intervention rollout to accelerate the delivery of health insurance education to childhood cancer survivors.

Nurse Corps' impact on increasing registered nurse staffing in critical shortage areas and facilities, 2017 to 2022.

BACKGROUND: The registered nurse (RN) workforce experienced critical pre-pandemic and pandemic shortages of labor in some areas in the United States. People living in these health professional shortage areas (HPSAs) may have less access to health services. The Bureau of Health Workforce within the Health Resources and Services Administration administers Nurse Corps scholarship and loan repayment programs to increase healthcare access by increasing the supply and distribution of RNs, nurse practitioners, and nurse faculty to HPSAs. The American Rescue Plan Act of 2021 (ARPA) made available considerable new resources for the program. PURPOSE: This paper reports on Nurse Corps applications, awards, and distribution in 2 cohorts in the period 2017 to 2022 to assess the impact of receiving an additional $200 million appropriated in 2021. DISCUSSION: Additional funds through ARPA were associated with nearly threefold increases in the number of Nurse Corps awards. Program participants worked in a total of 1,316 counties (42% of all U.S. counties) in 2020 to 2022, a 76% increase from 749 counties in 2017 to 2019. CONCLUSION: Increased funding for scholarship and loan repayment can help to improve the distribution of nurse labor to a greater number of critical shortage areas in the United States.

Feasibility, Acceptability, and Preliminary Effectiveness of a Combined Digital Platform and Community Health Worker Intervention for Patients With Heart Failure: Pilot Randomized Controlled Trial.

BACKGROUND: Heart failure (HF) is a burdensome condition and a leading cause of 30-day hospital readmissions in the United States. Clinical and social factors are key drivers of hospitalization. These 2 strategies, digital platforms and home-based social needs care, have shown preliminary effectiveness in improving adherence to clinical care plans and reducing acute care use in HF. Few studies, if any, have tested combining these 2 strategies in a single intervention. OBJECTIVE: This study aims to perform a pilot randomized controlled trial assessing the acceptability, feasibility, and preliminary effectiveness of a 30-day digitally-enabled community health worker (CHW) intervention in HF. METHODS: Adults hospitalized with a diagnosis of HF at an academic hospital were randomly assigned to receive digitally-enabled CHW care (intervention; digital platform +CHW) or CHW-enhanced usual care (control; CHW only) for 30 days after hospital discharge. Primary outcomes were feasibility (use of the platform) and acceptability (willingness to use the platform in the future). Secondary outcomes assessed preliminary effectiveness (30-day readmissions, emergency department visits, and missed clinic appointments). RESULTS: A total of 56 participants were randomized (control: n=31; intervention: n=25) and 47 participants (control: n=28; intervention: n=19) completed all trial activities. Intervention participants who completed trial activities wore the digital sensor on 78% of study days with mean use of 11.4 (SD 4.6) hours/day, completed symptom questionnaires on 75% of study days, used the blood pressure monitor 1.1 (SD 0.19) times/day, and used the digital weight scale 1 (SD 0.13) time/day. Of intervention participants, 100% responded very or somewhat true to the statement "If I have access to the [platform] moving forward, I will use it." Some (n=9, 47%) intervention participants indicated they required support to use the digital platform. A total of 19 (100%) intervention participants and 25 (89%) control participants had ≥5 CHW interactions during the 30-day study period. All intervention (n=19, 100%) and control (n=26, 93%) participants who completed trial activities indicated their CHW interactions were "very satisfying." In the full sample (N=56), fewer participants in the intervention group were readmitted 30 days after hospital discharge compared to the control group (n=3, 12% vs n=8, 26%; P=.12). Both arms had similar rates of missed clinic appointments and emergency department visits. CONCLUSIONS: This pilot trial of a digitally-enabled CHW intervention for HF demonstrated feasibility, acceptability, and a clinically relevant reduction in 30-day readmissions among participants who received the intervention. Additional investigation is needed in a larger trial to determine the effect of this intervention on HF home management and clinical outcomes. TRIAL REGISTRATION: Clinicaltrials.gov NCT05130008; https://clinicaltrials.gov/study/NCT05130008. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/55687.

Practicalities (and real-life experiences) of dementia in adults with Down syndrome.

Adults with down syndrome (DS) have a lifetime dementia risk in excess of 95%, with a median age of onset of 55 years, due to trisomy 21. Co-occurring Alzheimer's disease (AD) has increased morbidity and mortality, and it is now recommended to screen for AD in all adults with DS beginning at 40 years of age. In this manuscript, we present two clinical cases of adults with DS who developed AD summarizing their medical histories, presenting symptoms, path to diagnosis and psychosocial aspects of care collected from retrospective chart review with caregiver consent. These two cases were chosen due to their complexity and interwoven nature of the medical and psychosocial aspects, and highlight the complexity and nuance of caring for patients with DS and AD.

Predictors of COVID-19 infection and hospitalization in group homes for individuals with intellectual and/or developmental disabilities.

BACKGROUND: More than seven million people with intellectual and/or developmental disabilities (ID/DD) live in the US and may face an elevated risk for COVID-19. OBJECTIVE: To identify correlates of COVID-19 and related hospitalizations among people with ID/DD in group homes in Massachusetts. METHODS: We collected data during March 1, 2020-June 30, 2020 (wave 1) and July 1, 2020-March 31, 2021 (wave 2) from the Massachusetts Department of Public Health and six organizations administering 206 group homes for 1035 residents with ID/DD. The main outcomes were COVID-19 infections and related hospitalizations. We fit multilevel Cox proportional hazards models to estimate associations with observed predictors and assess contextual home- and organizational-level effects. RESULTS: Compared with Massachusetts residents, group home residents had a higher age-adjusted rate of COVID-19 in wave 1 (incidence rate ratio [IRR], 12.06; 95 % confidence interval [CI], 10.51-13.84) and wave 2 (IRR, 2.47; 95 % CI, 2.12-2.88) and a higher age-adjusted rate of COVID-19 hospitalizations in wave 1 (IRR, 17.64; 95 % CI, 12.59-24.70) and wave 2 (IRR, 4.95; 95 % CI, 3.23-7.60). COVID-19 infections and hospitalizations were more likely among residents aged 65+ and in group homes with 6+ resident beds and recent infection among staff and residents. CONCLUSIONS: Aggressive efforts to decrease resident density, staff-to-resident ratios, and staff infections through efforts such as vaccination, in addition to ongoing access to personal protective equipment and COVID-19 testing, may reduce COVID-19 and related hospitalizations in people with ID/DD living in group homes.

Using simulation modeling to inform intervention and implementation selection in a rapid stakeholder-engaged hybrid effectiveness-implementation randomized trial.

BACKGROUND: Implementation research generally assumes established evidence-based practices and prior piloting of implementation strategies, which may not be feasible during a public health emergency. We describe the use of a simulation model of the effectiveness of COVID-19 mitigation strategies to inform a stakeholder-engaged process of rapidly designing a tailored intervention and implementation strategy for individuals with serious mental illness (SMI) and intellectual/developmental disabilities (ID/DD) in group homes in a hybrid effectiveness-implementation randomized trial. METHODS: We used a validated dynamic microsimulation model of COVID-19 transmission and disease in late 2020/early 2021 to determine the most effective strategies to mitigate infections among Massachusetts group home staff and residents. Model inputs were informed by data from stakeholders, public records, and published literature. We assessed different prevention strategies, iterated over time with input from multidisciplinary stakeholders and pandemic evolution, including varying symptom screening, testing frequency, isolation, contact-time, use of personal protective equipment, and vaccination. Model outcomes included new infections in group home residents, new infections in group home staff, and resident hospital days. Sensitivity analyses were performed to account for parameter uncertainty. Results of the simulations informed a stakeholder-engaged process to select components of a tailored best practice intervention and implementation strategy. RESULTS: The largest projected decrease in infections was with initial vaccination, with minimal benefit for additional routine testing. The initial level of actual vaccination in the group homes was estimated to reduce resident infections by 72.4% and staff infections by 55.9% over the 90-day time horizon. Increasing resident and staff vaccination uptake to a target goal of 90% further decreased resident infections by 45.2% and staff infections by 51.3%. Subsequent simulated removal of masking led to a 6.5% increase in infections among residents and 3.2% among staff. The simulation model results were presented to multidisciplinary stakeholders and policymakers to inform the "Tailored Best Practice" package for the hybrid effectiveness-implementation trial. CONCLUSIONS: Vaccination and decreasing vaccine hesitancy among staff were predicted to have the greatest impact in mitigating COVID-19 risk in vulnerable populations of group home residents and staff. Simulation modeling was effective in rapidly informing the selection of the prevention and implementation strategy in a hybrid effectiveness-implementation trial. Future implementation may benefit from this approach when rapid deployment is necessary in the absence of data on tailored interventions. TRIAL REGISTRATION: ClinicalTrials.gov NCT04726371.

Tailored vs. General COVID-19 prevention for adults with mental disabilities residing in group homes: a randomized controlled effectiveness-implementation trial.

BACKGROUND: People with serious mental illness (SMI) and people with intellectual disabilities/developmental disabilities (ID/DD) are at higher risk for COVID-19 and more severe outcomes. We compare a tailored versus general best practice COVID-19 prevention program in group homes (GHs) for people with SMI or ID/DD in Massachusetts (MA). METHODS: A hybrid effectiveness-implementation cluster randomized control trial compared a four-component implementation strategy (Tailored Best Practices: TBP) to dissemination of standard prevention guidelines (General Best-Practices: GBP) in GHs across six MA behavioral health agencies. GBP consisted of standard best practices for preventing COVID-19. TBP included GBP plus four components including: (1) trusted-messenger peer testimonials on benefits of vaccination; (2) motivational interviewing; (3) interactive education on preventive practices; and (4) fidelity feedback dashboards for GHs. Primary implementation outcomes were full COVID-19 vaccination rates (baseline: 1/1/2021-3/31/2021) and fidelity scores (baseline: 5/1/21-7/30/21), at 3-month intervals to 15-month follow-up until October 2022. The primary effectiveness outcome was COVID-19 infection (baseline: 1/1/2021-3/31/2021), measured every 3 months to 15-month follow-up. Cumulative incidence of vaccinations were estimated using Kaplan-Meier curves. Cox frailty models evaluate differences in vaccination uptake and secondary outcomes. Linear mixed models (LMMs) and Poisson generalized linear mixed models (GLMMs) were used to evaluate differences in fidelity scores and incidence of COVID-19 infections. RESULTS: GHs (n=415) were randomized to TBP (n=208) and GBP (n=207) including 3,836 residents (1,041 ID/DD; 2,795 SMI) and 5,538 staff. No differences were found in fidelity scores or COVID-19 incidence rates between TBP and GBP, however TBP had greater acceptability, appropriateness, and feasibility. No overall differences in vaccination rates were found between TBP and GBP. However, among unvaccinated group home residents with mental disabilities, non-White residents achieved full vaccination status at double the rate for TBP (28.6%) compared to GBP (14.4%) at 15 months. Additionally, the impact of TBP on vaccine uptake was over two-times greater for non-White residents compared to non-Hispanic White residents (ratio of HR for TBP between non-White and non-Hispanic White: 2.28, p = 0.03). CONCLUSION: Tailored COVID-19 prevention strategies are beneficial as a feasible and acceptable implementation strategy with the potential to reduce disparities in vaccine acceptance among the subgroup of non-White individuals with mental disabilities. TRIAL REGISTRATION: ClinicalTrials.gov, NCT04726371, 27/01/2021. https://clinicaltrials.gov/study/NCT04726371 .

Health Insurance Navigation Tools Intervention: A Pilot Trial Within the Childhood Cancer Survivor Study.

PURPOSE: Childhood cancer survivors are at increased risk for underinsurance and health insurance-related financial burden. Interventions targeting health insurance literacy (HIL) to improve the ability to understand and use health insurance are needed. METHODS: We codeveloped a four-session health insurance navigation tools (HINT) intervention, delivered synchronously by a patient navigator, and a corresponding booklet. We conducted a randomized pilot trial with survivors from the Childhood Cancer Survivor Study comparing HINT with enhanced usual care (EUC; booklet). We assessed feasibility, acceptability, and preliminary efficacy (HIL, primary outcome; knowledge and confidence with health insurance terms and activity) on a 5-month survey and exit interviews. RESULTS: Among 231 invited, 82 (32.5%) survivors enrolled (53.7% female; median age 39 years, 75.6% had employer-sponsored insurance). Baseline HIL scores were low (mean = 28.5; 16-64; lower scores better); many lacked knowledge of Affordable Care Act (ACA) provisions. 80.5% completed four HINT sessions, and 93.9% completed the follow-up survey. Participants rated HINT's helpfulness a mean of 8.9 (0-10). Exit interviews confirmed HINT's acceptability, specifically its virtual and personalized delivery and helpfulness in building confidence in understanding one's coverage. Compared with EUC, HINT significantly improved HIL (effect size = 0.94. P < .001), ACA provisions knowledge (effect size = 0.73, P = .003), psychological financial hardship (effect size = 0.64, P < .006), and health insurance satisfaction (effect size = 0.55, P = .03). CONCLUSION: Results support the feasibility and acceptability of a virtual health insurance navigation program targeted for childhood survivors to improve HIL. Randomized trials to assess the efficacy and sustainability of health insurance navigation on HIL and financial burden are needed.

Results of inaugural international Down Syndrome Societal Services and Supports survey.

PURPOSE: We previously designed the Down Syndrome Societal Services and Supports Survey (DS-4S) to measure country-specific supports for people with Down syndrome (DS) across multiple life domains (healthcare, education, policy, independence, and community inclusion). We now report and analyze the results. METHODS: We partnered with international DS consortia, who distributed the DS-4S to 154 cumulative members representing over 100 countries. Organizations were included if they had a holistic focus on the lives of people with DS and if at least 50% of their members either have DS or are family members of people with DS. Factor analysis was used to analyze the results. RESULTS: We received survey responses from 55 different organizations in 50 countries who met inclusion criteria. Each country had complete data for at least 4 of the 5 domains. The lowest 5 scores were from countries in Africa and Asia; the highest 5 scores were in Europe and North America. CONCLUSION: The responses to the DS-4S stratified countries within each surveyed domain. The DS-4S can now be used to track countries' progress over time and to determine which countries have best practices that might be replicated. We will publish the results and update them biennially at www.DownSyndromeQualityOfLife.com.

Projecting the Future Registered Nurse Workforce After the COVID-19 Pandemic.

Importance: Health care delivery systems rely on a well-prepared and adequately sized registered nurse (RN) workforce. The US RN workforce decreased by more than 100 000 in 2021 during the COVID-19 pandemic-a far greater single-year drop than observed over the past 4 decades. The implication for the longer-term growth of the RN workforce is unknown. Objective: To describe recent trends in RN employment through 2023 and forecast the growth of the RN workforce through 2035. Design, Setting, and Participants: Descriptive analysis of recent trends since the start of the COVID-19 pandemic in RN employment using data from the US Bureau of the Census Current Population Survey and including employed RNs aged 23 to 69 years from 1982 through 2023, and retrospective cohort analysis of employment trends by birth year and age to project the age distribution and employment of RNs through 2035. Main Outcome and Measures: Annual full-time equivalent (FTE) employment of RNs by age, demographics, and sector of employment; forecast of RN workforce by age through 2035. Results: The final sample included 455 085 RN respondents aged 23 to 69 years. After a sharp decline in 2021, RN employment recovered, and the total number of FTE RNs in 2022 and 2023 was 6% higher than in 2019 (3.35 million vs 3.16 million, respectively). Using data on employment, education, and population through 2022, the size of the RN workforce was projected to increase by roughly 1.2 million FTEs to 4.56 million by 2035, close to prepandemic forecasts. Growth will be driven primarily by RNs aged 35 to 49 years, who are projected to compose nearly half (47%) of the RN workforce in 2035, up from 38% in 2022. Conclusions and Relevance: In this study, the rebound in the total size of the US RN workforce during 2022 and 2023 indicates that the earlier drop in RN employment during the first 2 years of the COVID-19 pandemic was likely transitory. Updated forecasts of the future RN workforce are very close to those made before the pandemic.

Feasibility, Acceptability, and Preliminary Effectiveness of a Combined Digital Platform and Community Health Worker Intervention for Patients With Heart Failure: Protocol for a Randomized Controlled Trial.

BACKGROUND: Interventions focused on remote monitoring and social needs care have shown promise in improving clinical outcomes for patients with heart failure (HF). However, patient willingness to use technology as well as concerns about access in underresourced settings have limited digital platform implementation and adoption. There is little research in HF populations examining the effect of a combined digital and social needs care intervention that could enhance patient engagement in digital platform use while closing gaps in care related to social determinants of health. Here, we describe the protocol for a clinical trial of a digitally enabled community health worker intervention designed for patients with HF. OBJECTIVE: This study aims to describe the protocol for a randomized controlled trial assessing the acceptability, feasibility, and preliminary effectiveness of an intervention that combines remote monitoring with a digital platform and community health worker (CHW) social needs care for patients with HF who are transitioning from hospital to home. Given the elevated morbidity and mortality, identifying comprehensive and patient-centered interventions at the time of hospital care transitions that can improve clinical outcomes, impact cost, and augment the quality of care for this cohort is a priority. METHODS: This trial randomized adult inpatient participants (n=50) with a diagnosis of HF receiving care at a single academic health care institution to the 30-day intervention (digital platform+CHW pairing+usual care) or the 30-day control (CHW pairing+usual care) arms. All study participants completed baseline questionnaires and 30-day exit interviews and questionnaires. The primary outcomes will be acceptability, feasibility, and preliminary effectiveness. RESULTS: This clinical trial opened for enrollment in September 2022 and was completed in June 2023. Initial results are expected to be published in the spring of 2024, and analysis is currently underway. Feasibility outcome measures will include the use rates of the biometric sensor (average hours per day), the digital blood pressure monitor (average times per day), the weight scale (average times per day), and the completion of the symptoms questionnaire (average times per day). The acceptability outcome will be measured by the patients' response to the truthfulness of the statement that they would be willing to use the digital platform in the future (response options: very true, somewhat true, or not true). Preliminary effectiveness will be measured by tracking 30-day clinical outcomes (hospital readmissions, emergency room visits, and missed primary care and cardiology appointments). CONCLUSIONS: The results of this investigation are expected to contribute to our understanding of the use of digital interventions and the implementation of supportive home-based social needs care to enhance engagement and the potential effectiveness of clinically focused digital platforms. These results may inform the construction of a future multi-institutional trial designed to test the true effectiveness of this intervention in HF. TRIAL REGISTRATION: ClinicalTrials.gov NCT05130008; https://clinicaltrials.gov/study/NCT05130008. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/55687.

Unspoken Truths: Mental Health Among Academic Surgeons.

OBJECTIVE: To characterize the current state of mental health within the surgical workforce in the United States. BACKGROUND: Mental illness and suicide is a growing concern in the medical community; however, the current state is largely unknown. METHODS: Cross-sectional survey of the academic surgery community assessing mental health, medical error, and suicidal ideation. The odds of suicidal ideation adjusting for sex, prior mental health diagnosis, and validated scales screening for depression, anxiety, post-traumatic stress disorder (PTSD), and alcohol use disorder were assessed. RESULTS: Of 622 participating medical students, trainees, and surgeons (estimated response rate=11.4%-14.0%), 26.1% (141/539) reported a previous mental health diagnosis. In all, 15.9% (83/523) of respondents screened positive for current depression, 18.4% (98/533) for anxiety, 11.0% (56/510) for alcohol use disorder, and 17.3% (36/208) for PTSD. Medical error was associated with depression (30.7% vs. 13.3%, P <0.001), anxiety (31.6% vs. 16.2%, P =0.001), PTSD (12.8% vs. 5.6%, P =0.018), and hazardous alcohol consumption (18.7% vs. 9.7%, P =0.022). Overall, 13.2% (73/551) of respondents reported suicidal ideation in the past year and 9.6% (51/533) in the past 2 weeks. On adjusted analysis, a previous history of a mental health disorder (aOR: 1.97, 95% CI: 1.04-3.65, P =0.033) and screening positive for depression (aOR: 4.30, 95% CI: 2.21-8.29, P <0.001) or PTSD (aOR: 3.93, 95% CI: 1.61-9.44, P =0.002) were associated with increased odds of suicidal ideation over the past 12 months. CONCLUSIONS: Nearly 1 in 7 respondents reported suicidal ideation in the past year. Mental illness and suicidal ideation are significant problems among the surgical workforce in the United States.

COVID-19-Related Outcomes Among Group Home Residents with Serious Mental Illness in Massachusetts in the First Year of the Pandemic.

This study examined COVID-19 infection and hospitalizations among people with serious mental illness who resided in residential care group homes in Massachusetts during the first year of the COVID-19 pandemic. The authors analyzed data on 2261 group home residents and COVID-19 data from the Massachusetts Department of Public Health. Outcomes included positive COVID-19 tests and COVID-19 hospitalizations March 1, 2020-June 30, 2020 (wave 1) and July 1, 2020-March 31, 2021 (wave 2). Associations between hazard of outcomes and resident and group home characteristics were estimated using multi-level Cox frailty models including home- and city-level frailties. Between March 2020 and March 2021, 182 (8%) residents tested positive for COVID-19, and 51 (2%) had a COVID-19 hospitalization. Compared with the Massachusetts population, group home residents had age-adjusted rate ratios of 3.0 (4.86 vs. 1.60 per 100) for COVID infection and 13.5 (1.99 vs. 0.15 per 100) for COVID hospitalizations during wave 1; during wave 2, the rate ratios were 0.5 (4.55 vs. 8.48 per 100) and 1.7 (0.69 vs. 0.40 per 100). In Cox models, residents in homes with more beds, higher staff-to-resident ratios, recent infections among staff and other residents, and in cities with high community transmission risk had greater hazard of COVID-19 infection. Policies and interventions that target group home-specific risks are needed to mitigate adverse communicable disease outcomes in this population.Clinical Trial Registration Number This study provides baseline (i.e., pre-randomization) data from a clinical trial study NCT04726371.

Feasibility and Acceptability of a Combined Digital Platform and Community Health Worker Intervention for Patients With Heart Failure: Single-Arm Pilot Study.

BACKGROUND: Heart failure (HF) is one of the leading causes of hospital admissions. Clinical (eg, complex comorbidities and low ejection fraction) and social needs factors (eg, access to transportation, food security, and housing security) have both contributed to hospitalizations, emphasizing the importance of increased clinical and social needs support at home. Digital platforms designed for remote monitoring of HF can improve clinical outcomes, but their effectiveness has been limited by patient barriers such as lack of familiarity with technology and unmet social care needs. To address these barriers, this study explored combining a digital platform with community health worker (CHW) social needs care for patients with HF. OBJECTIVE: We aim to determine the feasibility and acceptability of an intervention combining digital platform use and CHW social needs care for patients with HF. METHODS: Adults (aged ≥18 years) with HF receiving care at a single health care institution and with a history of hospital admission in the previous 12 months were enrolled in a single-arm pilot study from July to November 2021 (N=14). The 30-day intervention used a digital platform within a mobile app that included symptom questionnaire and educational videos connected to a biometric sensor (tracking heart rate, oxygenation, and steps taken), a digital weight scale, and a digital blood pressure monitor. All patients were paired with a CHW who had access to the digital platform data. A CHW provided routine phone calls to patients throughout the study period to discuss their biometric data and to address barriers to any social needs. Feasibility outcomes were patient use of the platform and engagement with the CHW. The acceptability outcome was patient willingness to use the intervention again. RESULTS: Participants (N=14) were 67.7 (SD 11.7) years old; 8 (57.1%) were women, and 7 (50%) were insured by Medicare. Participants wore the sensor for 82.2% (n=24.66) of study days with an average of 13.5 (SD 2.1) hours per day. Participants used the digital blood pressure monitor and digital weight scale for an average of 1.2 (SD 0.17) times per day and 1.1 (SD 0.12) times per day, respectively. All participants completed the symptom questionnaire on at least 71% (n=21.3) of study days; 11 (78.6%) participants had ≥3 CHW interactions, and 11 (78.6%) indicated that if given the opportunity, they would use the platform again in the future. Exit interviews found that despite some platform "glitches," participants generally found the remote monitoring platform to be "helpful" and "motivating." CONCLUSIONS: A novel intervention combining a digital platform with CHW social needs care for patients with HF was feasible and acceptable. The majority of participants were engaged throughout the study and indicated their willingness to use the intervention again. A future clinical trial is needed to determine the effectiveness of this intervention.

Assessment of patient-reported symptoms and distress in IgG4-related disease (IgG4-RD): Development, clinical validation, and content validation of the IgG4-RD Symptom Severity Index.

OBJECTIVE: IgG4-related disease (IgG4-RD), a multi-organ autoimmune disease, causes diverse manifestations that can lead to symptoms and distress. We developed and validated the Symptom Severity Index (SSI) to assess symptom burden. METHODS: A pilot SSI was tested in n = 5; several gaps were identified. Twenty semi-structured qualitative interviews were performed to expand the item set and identify missing symptoms. Subsequent changes resulted in the current SSI; it was administered with quality of life (QOL) measures to n = 136. We assessed symptom burden and the construct validity of the SSI. A distress score for each symptom is calculated by multiplying symptom frequency ("Never" [0 points] to "Every Day" [3 points]) by associated distress ("None" [0 points] to "Very Much" [4 points]). Each distress score is summed to calculate a total SSI score. RESULTS: The SSI assesses the frequency and distress of 24 symptoms. Among n = 136 with ≥ 1 SSI, 90% experienced ≥ 1 symptom and 88% had distress. The median SSI score was 6.5 (IQR 3.0, 18.0). Fear of more severe disease was observed in 49%. The SSI inversely correlated with the SF-36 (r= - 0.51, p<0.001), the feeling thermometer (r= - 0.28, p<0.001), and the EQ-5D (r= - 0.28, p<0.001). The median SSI score was higher during active vs non-active disease among n = 52 who completed >1 SSI (15 [6, 26] vs. 3 [2, 14], p = 0.008). CONCLUSIONS: Symptoms and distress are common in IgG4-RD and associated with worse health-related QOL. The SSI has face, content, and construct validity; it corresponds with QOL measures.

The needs of family caregivers of persons living with dementia cared for in primary care practices.

RATIONALE: The informal caregivers who provide unpaid support for persons living with dementia (PLWD) are often unprepared to appropriately manage symptoms and navigate health services to support themselves or the PLWD. AIM: To understand informal caregivers' perceived capabilities of handling dementia symptomology and perceived support from providers. METHODS: We identified and surveyed caregivers of primary care patients in the Mass General Brigham health system. We included a self-efficacy questionnaire to assess caregivers' ability and confidence in access to dementia care, symptom management, and provider support. RESULTS: Respondents indicated that although their provider had knowledge of dementia and memory care, they were least likely to agree (39.2%) that their provider helped them with these challenging symptoms. Those who live with the care recipient were least likely to receive advice about common symptoms (43.6%) and to access community services (63.8%), and in general felt moderately knowledgeable about the progression of the disease (47.9%). CONCLUSIONS: The findings imply that caregivers are aware of disease progression, dementia symptoms, and do not feel supported by their providers in managing care or accessing support services. There is opportunity to support informal caregivers in a primary care setting by appropriately uptraining providers in dementia care.

Attitudes Toward Injection Practices Among People Who Inject Drugs Utilizing Medical Services: Opportunities for Harm Reduction Counseling in Health Care Settings.

Hospitals are an important setting to provide harm reduction services to people who inject drugs (PWID). This study aimed to characterize PWID's injection practices, the perceived risk and benefits of those practices, and the immediate IDU risk environment among individuals seeking medical care. Surveys were administered to 120 PWID seeking medical services at an urban hospital. Poisson regression was used to examine the effect of perceived risk or importance of injection practices on the rate of engaging in those practices. The mean participant reported "often" reusing syringes and "occasionally" cleaning their hands or skin prior to injection. 78% of participants reported that syringes were extremely risky to share, which was associated with lower likelihood of sharing them (ARR: 0.59; 95% CI: 0.36-0.95). 38% of participants reported it was extremely important to use a new syringe for each injection, and these participants were more likely to report never reusing syringes >5 times (ARR: 1.62, 95% CI: 1.11-2.35). Other factors that may influence injection practices-including fear of arrest, withdrawal, lack of access to supplies, and injecting outdoors-were common among participants. In conclusion, practices that place PWID at risk of injury and infection are common, and risk-benefit perception is associated with some, but not all, injection practices. Injecting in challenging environments and conditions is common. Therefore, harm reduction counseling in medical settings must be accompanied by other strategies to reduce risk, including facilitating access to supplies. Ultimately, structural interventions, such as affordable housing, are needed to address the risk environment.

Global health measures from a National Down Syndrome Registry.

People with Down syndrome (DS) have a unique medical profile which may impact views of health. We aimed to study the use of global health measures for DS in a national cohort. We prospectively surveyed parents of individuals with DS from the DS-Connect® registry with validated Patient Reported Outcomes Measurement Information System (PROMIS)® instruments of global health. Analyses included use of scoring manuals and the PROMIS® scoring service, descriptive statistics, and t-tests. We received completed surveys from 223 parents of individuals with DS; previously published limitations of the instrument in this population were shown again. T-scores differed from the available comparative standardized scores to these measures from PROMIS® reference population on Fatigue (p < 0.001) and Global Health (p < 0.001), but not on Pain Interference (p = 0.41).

Group Home Staff Experiences With Work and Health in the COVID-19 Pandemic in Massachusetts.

Importance: Direct reports of the experiences of staff working in group homes for people with serious mental illness (SMI) and/or intellectual or developmental disabilities (ID/DD) are rarely reported. Hearing from workers about their experiences in the COVID-19 pandemic may inform future workforce and public policy. Objective: To gather baseline data on worker experience with the perceived effects of COVID-19 on health and work in the pandemic prior to initiating an intervention to mitigate the spread of COVID-19 and to measure differences in worker experience by gender, race, ethnicity, education, and resident population served (persons with SMI and/or IDD/DD). Design, Setting, and Participants: This mixed-mode, cross-sectional survey study was conducted using online then paper-based self-administration from May to September 2021 at the end of the first year of the pandemic. Staff working in 415 group homes that provided care within 6 Massachusetts organizations serving adults aged 18 years or older with SMI and/or ID/DD were surveyed. The eligible survey population included a census of staff who were currently employed in participating group homes during the study period. A total of 1468 staff completed or partially completed surveys. The overall survey response rate was 44% (range by organization, 20% to 52%). Main Outcomes and Measures: Self-reported experiential outcomes were measured in work, health, and vaccine completion. Bivariate and multivariate analyses explore experiences by gender, race, ethnicity, education, trust in experts and employers, and population served. Results: The study population included 1468 group home staff (864 [58.9%] women; 818 [55.7%] non-Hispanic Black; 98 [6.7%] Hispanic or Latino). A total of 331 (22.5%) group home staff members reported very serious perceived effects on health; 438 (29.8%) reported very serious perceived effects on mental health; 471 (32.1%) reported very serious perceived effects on health of family and friends; and 414 reported very serious perceived effects (28.2%) on access to health services, with statistically significant differences observed by race and ethnicity. Vaccine acceptance was higher among persons with higher educational attainment and trust in scientific expertise and lower among persons who self-reported as Black or Hispanic/Latino. A total of 392 (26.7%) respondents reported needing support for health needs, and 290 (19.8%) respondents reported needing support for loneliness or isolation. Conclusions and Relevance: In this survey study, approximately one-third of group home workers reported serious personal health and access to health care barriers during the first year of the COVID-19 pandemic in Massachusetts. Addressing unmet health needs and access to health and mental health services, including inequities and disparities by race, ethnicity, and education, should benefit staff health and safety, as well as that of the individuals with disabilities who rely on them for support and care.

Early implementation of full-practice authority: A survey of Massachusetts nurse practitioners.

BACKGROUND: In January 2021, Massachusetts granted nurse practitioners (NPs) full-practice authority (FPA). Little is known about how FPA changes the day-to-day work of NPs. PURPOSE: To examine changes in practice barriers and care delivery in the early stages of FPA. METHODOLOGY: Descriptive analysis of a web-based survey of clinically active NPs in Massachusetts from October to December 2021, using Fisher exact tests to examine the associations between the perception that FPA improved work and other variables. RESULTS: Survey response rate was 50.3% ( N = 147). Overall, 79% of NPs believe that clinical work is unchanged by FPA. Practicing outside institutions is a significant predictor of FPA improving work ( p < .05). Larger proportions of respondents feel that efficiency (22%), patient centeredness (20%), and timeliness (20%) are improved by FPA compared with effectiveness (16%), equity (14%), and safety (10%). Almost half of those reporting that FPA improves overall care also report improved efficiency (50%, p < .0001), but only 22% report improved safety ( p < .05). Of those believing that FPA improved work, a minority no longer need physician review of new controlled substance prescriptions (29%, p < .01), a practice agreement (32%, p < .05), or physician signature on clinical documentation (22%, p < .05). CONCLUSIONS: Almost 1 year after FPA was passed in Massachusetts, the large majority of NPs report no changes in their day-to-day work, suggesting that FPA implementation is slow. IMPLICATIONS: Concerted efforts by regulators, employers, and individual NPs are needed to ensure that legislated FPA is effectively implemented inside organizations and among payers.