Faculty Bibliography

BACKGROUND:for HNC as a digital patient-reported symptom monitoring system that enables early symptom detection and real-time interventions at the point of care. With this study protocol, we aim to test the effectiveness of the ePVA in improving HNC outcomes in real-world settings and to identify implementation strategies optimizing its effectiveness. METHODS:We will conduct a longitudinal mixed-methods hybrid type I study at four National Cancer Institute-designated Comprehensive Cancer Centers serving diverse populations in rural and urban settings (New York University, the University of Kansas Cancer Center, Fox Chase Cancer Center, and Baylor College of Medicine) guided by the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework. Patient eligibility criteria include having histologically diagnosed HNC and undergoing radiation therapy with or without chemotherapy for curative intent. We will also interview clinicians caring for patients with HNC at the participating institutions regarding facilitators and barriers to implementing the ePVA. The accrual goal is 270 patients. Aim 1 is to determine the effect of the ePVA on HNC symptoms in a two-arm (usual care vs. ePVA + usual care) trial. The study's primary outcomes are patients' self-reported social function, senses of taste and smell, and swallowing, measured by the European Organization for Research and Treatment of Cancer QLQ-C30 and QLQ-H&N35. For Aim 2, we will interview patients (n = 40) as well as clinicians (n = 30) caring for patients with HNC at the participating institutions regarding facilitators and barriers to implementing the ePVA. In Aim 3, we will integrate Aims 1 and 2 data to identify strategies that optimize the use of the ePVA. DISCUSSION/CONCLUSIONS:The overarching goal of this research is to advance cancer care by identifying implementation standards for effective, widespread use of the ePVA that apply to all patient-reported outcomes in cancer care. TRIAL REGISTRATION/BACKGROUND:ClinicalTrials.gov NCT06030011. Registered on 8 September 2023.

OBJECTIVE/UNASSIGNED:To compare the effectiveness of nurse led telephonic palliative care versus specialty outpatient palliative care on quality of life, symptom burden, loneliness, and healthcare use, after attending the emergency department. DESIGN/UNASSIGNED:Pragmatic, randomised clinical trial. SETTING/UNASSIGNED:Emergency Medicine Palliative Care Access (EMPallA) randomised controlled trial enrolling participants from 18 emergency departments in 15 geographically diverse healthcare systems in nine US states, from 1 April 2018 to 30 June 2022. PARTICIPANTS/UNASSIGNED:Of 39 254 eligible patients, 1283 adults who visited the emergency department, were aged ≥50 years, who spoke English or Spanish, and had advanced cancer or end stage organ failure, were randomised to receive nurse led telephonic palliative care (n=639) or specialty outpatient palliative care (n=644). INTERVENTIONS/UNASSIGNED:The nurse led telephonic palliative care arm consisted of weekly or biweekly calls over six months made by registered nurses certified in hospice and palliative care. For the specialty outpatient palliative care arm, patients had one visit each month for six months with a specialty trained hospice and palliative medicine provider. MAIN OUTCOME MEASURES/UNASSIGNED:The primary outcome was change in patient reported quality of life at six months, measured by the Functional Assessment of Cancer Therapy-General (FACT-G) questionnaire. Secondary outcomes were change in symptom burden and patient reported loneliness after six months, and healthcare use, measured as the number of emergency department revisits, inpatient days, and hospice use, from enrolment to 12 months. RESULTS/UNASSIGNED:639 patients were assigned to nurse telephonic services and 434 (68%) engaged in care until death, or until they required hospice services or graduated from the programme. For specialty outpatient palliative care, 644 patients were assigned and 344 (53%) attended one or more visits, with an average of 2.7 visits. The mean change in FACT-G scores over six months for the nurse telephonic arm (n=418) was 3.7 (95% confidence interval (CI) 2.3 to 5.1) points compared with 3.1 (1.6 to 4.6) for those in the specialty outpatient care arm (n=409). In the model including all patients who survived to six months (n=1090), the estimated difference in average change in quality of life was 0.71 (95% CI -1.19 to 2.61) points higher in the nurse led telephonic palliative care arm. The analysis did not show any clinically meaningful differences in the change in quality of life between the treatment arms. Also, no important differences between groups were found for secondary outcomes or in subgroup analyses. CONCLUSIONS/UNASSIGNED:The results of the study provided no clear evidence that nurse led telephonic palliative care improved quality of life, or any secondary outcomes, relative to specialty outpatient palliative care. TRIAL REGISTRATION/UNASSIGNED:ClinicalTrials.gov NCT03325985.

Factorial study designs can be important for understanding the effectiveness of interventions when multiple interventions are under investigation. In this design setting, a unit of randomization can be assigned to any combination of interventions. The rationale for taking this kind of approach can vary depending on the specific questions targeted by the research. These questions, in turn, have implications for the way in which the analyses will be conducted. The goal in this paper is to describe how we developed a factorial design along with a Bayesian analytic plan for a large cluster-randomized trial-the Emergency Departments LEading the transformation of Alzheimer's and Dementia care (ED-LEAD) study-focused on improving care for persons living with dementia.

OBJECTIVE:We sought to identify patterns in occupational therapy (OT) and physical therapy (PT) home health care visits among people living with dementia (PLWD) by (1) level of function care partner report compared with administrative data, (2) race and ethnicity, and (3) level of socioeconomic resources. DESIGN/METHODS:A secondary analysis. SETTING AND PARTICIPANTS/METHODS:We used data collected from 152 PLWD-care partner dyads enrolled in a hybrid type I effectiveness trial at a large, urban, Medicare-certified, nonprofit home health care agency in the northeastern United States. METHODS:Function was measured with the Caregiver Quality of Life Assistance in Activities of Daily Living (ADLs) and Assistance in Instrumental Activities of Daily Living (IADLs) subscales. PLWD's addresses were used to measure socioeconomic deprivation using the Area Deprivation Index (ADI). The number of OT/PT visits were calculated for the first 30 days of enrollment in the study with care partners' reports and administrative data. Visit data were compared and analyzed using a Wilcoxon signed-rank test and a zero-inflated negative binomial regression. Differences in the number of OT/PT visits was compared across racial and ethnic groups, ADI quartiles, and level of function using regression and controlling for education and comorbidities. RESULTS:Hispanic (mean: 1.4, SD: 0.754) and non-Hispanic Black (mean: 1.6, SD: 0.769) PLWD had significantly lower ADL function at baseline than White individuals (mean: 2.103, SD: 0.882) (P = .002) that increased over 30 days (P = .513). A significant difference existed between care partner and administrative reports in the number of PT visits (F = 0.97, P = .459) but not OT visits. There were no differences in OT/PT utilization based on race and ethnicity and socioeconomic resources. CONCLUSIONS AND IMPLICATIONS/CONCLUSIONS:Caregiver report was not reliable for PT visits received in home health care. OT/PT home health care utilization may help reduce disparities in ADL function across racial and ethnic groups.

Assisted living (AL) and residential care (RC) settings are experiencing substantial growth as older adults with lower care needs seek alternatives to nursing homes. Despite this trend, there is a lack of skilled nursing care to support palliative care (PC) in these environments. Primary PC delivered by AL staff has emerged as a potential model to bridge this gap, focusing on symptom management and holistic support for individuals with serious illness. A metasynthesis of 88 qualitative studies was conducted to explore the provision of primary PC in AL/RC settings. The National Consensus Project Clinical Practice Guidelines for Quality Palliative Care was used to provide a holistic framework to identify unmet PC need and gaps in PC delivery. Studies published between 2012 and 2024 were analyzed to identify themes and categories related to PC domains, including physical, psychological, social, spiritual, cultural, end-of-life care, and ethical and legal considerations. Thematic synthesis revealed key findings across the identified PC domains within AL/RC settings. Studies highlighted challenges and opportunities for delivering primary PC in these environments, emphasizing the importance of addressing physical symptoms, psychological distress, social isolation, and spiritual needs among residents with serious illnesses. The metasynthesis underscores the critical role of primary PC in enhancing quality of life and care continuity for older adults residing in AL/RC settings. It also identifies gaps in current practices and emphasizes the need for tailored interventions and training to support care providers in delivering comprehensive PC to this population. By integrating qualitative research findings with the National Consensus Project guidelines, this metasynthesis provides a comprehensive overview of primary PC in AL/RC settings. The study underscores the necessity of enhancing PC delivery in these environments to meet the evolving needs of older adults with serious illnesses, thereby improving overall quality of care for residents with unmet palliative needs.

BACKGROUND:Despite the need, care partners of persons living with mild cognitive impairment (MCI) use supportive services less. The unique needs of care partners to persons living with MCI are not well described. This study explores how care partners support the inner strength of persons newly diagnosed with MCI. METHODS:Nine dyads of persons living with MCI and their care partners completed semi-structured interviews, analyzed according to the Listening Guide methodology. RESULTS:Care partners described supporting inner strengths of persons living with MCI by carrying the cognitive load and being reliable. Reconceptualizing identity was foundational. Across themes, care partners needed simultaneous support for themselves. DISCUSSION/CONCLUSIONS:This study represents the perspectives of a well-defined group of care partners to persons living with MCI. Eliciting the perspectives of underrepresented care partners and equitable access to MCI diagnosis are essential for future research. Dyadic supportive services tailored for MCI using a strengths-based approach are needed. HIGHLIGHTS/CONCLUSIONS:Care partners to persons living with mild cognitive impairment (MCI) are unique. Care partners support inner strength of persons living with MCI and need simultaneous support. Care partners reconceptualize their identities, are reliable, and carry cognitive load. Methods for eliciting perspectives of underrepresented care partners are needed. Supportive services tailored for MCI using a strengths-based approach are needed.

OBJECTIVES/OBJECTIVE:Home health care (HHC) plays a pivotal role in serving millions of US adults aging in place. Although the HHC population is growing rapidly in both size and diversity, driven by an aging US population and a changing demographic profile, there are increasing concerns of equity in HHC, particularly regarding how vulnerable populations are affected under current HHC practices. The purpose of this study was to examine the variations in accessing high-quality HHC in racial and ethnic minority groups and persons living with dementia. DESIGN/METHODS:Cross-sectional, secondary analysis. SETTING AND PARTICIPANTS/METHODS:Older adults who received HHC in 2016 from agencies with a star rating of overall care quality from the Home Health Compare program. METHODS:Start of care data from the 2016 HHC Outcome and Assessment Information Set was linked to Master Beneficiary Summary File, Home Health Compare, and Provider of Services file to address the aim. Multinomial regressions were used in analysis when risk-adjusting for individual and agency characteristics. RESULTS:Our risk-adjusted estimates, based on data from 574,682 older adults ≥65 years of age served by 8634 HHC agencies nationwide (2290 offering high-quality care, 4023 providing moderate-quality care, and 2321 delivering low-quality care), revealed significant disparities. Non-Hispanic Blacks (relative risk ratio, 0.62; 95% CI, 0.61-0.64) and Hispanics (relative risk ratio, 0.72; 95% CI, 0.70-0.74) were significantly less likely to receive care from high-quality agencies. Additionally, having dementia exacerbated disparities in accessing high-quality HHC between racial and ethnic minorities and White Americans. CONCLUSIONS AND IMPLICATIONS/CONCLUSIONS:Racial and ethnic minority individuals face significant disadvantages in accessing high-quality HHC, with persons living with dementia from these groups being the most disadvantaged. Further research is warranted to investigate the referral and admission processes for HHC. Our findings highlight the need for actions from clinicians and policymakers to tackle potential biases in the aforementioned care processes.