Publications by authors named "Karen Donelan"

Article Synopsis
  • The study aimed to evaluate how the COVID-19 pandemic affected the health and access to services for both paid staff and unpaid caregivers of individuals with dementia.
  • Questionnaires were distributed among these caregivers across several communities in Miami, Boston, and Baltimore to gather their experiences during the pandemic.
  • Results indicated that paid staff experienced higher rates of COVID-19 exposure and health service disruptions, while unpaid caregivers reported more severe depressive symptoms, highlighting the need for tailored support policies for both groups post-pandemic.
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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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).

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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.

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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.

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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.

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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.

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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.

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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).

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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.

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Background: Coaching has been shown to decrease physician burnout; however, coachee outcomes have been the focus. We report the impact of coaching on women-identifying surgeons who participated as coaches in a 9-month virtual program.

Methods: A coaching program was implemented in the Association of Women Surgeons (AWS) to determine the effects of coaching on well-being and burnout from 2018 to 2020.

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Purpose: Through a survey-based approach, we sought to investigate regional differences in gender-affirming hormone therapy (GAHT) prescribing practices, as well as HIV screening and prevention practices among clinicians providing care to transgender individuals.

Methods: Our survey was disseminated between December 2019 and January 2021 to clinicians who prescribe GAHT within New England (United States). Between-group differences in GAHT prescribing and HIV screening/prevention practices were evaluated by practice setting and subspecialty.

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Background: Down syndrome is the most common liveborn genetic condition. However, there are no surveys measuring societal services and supports for people with Down syndrome. We developed a questionnaire so that initiatives could be targeted towards countries most in need of assistance.

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