Stephanie DiFiglia

Background: Illness burden in cystic fibrosis (CF) is variable and sociodemographic characteristics—including female sex, minoritized race/ethnicity, and lower socioeconomic status (SES)—may increase the risk of burden. More information about these associations is needed. Methods: This secondary analysis used baseline data from adults with CF (AwCF) participating in a palliative care implementation trial who completed questionnaires, including the Integrated Palliative Care Outcome Scale, Memorial Symptom Assessment Scale–Cystic Fibrosis , and Cystic Fibrosis Questionnaire–Revised . Bivariate analyses and general linear models evaluated associations between measures and potential vulnerabilities. Results: There were 273 AwCF (mean [SD] age: 38.7 [14.5] years; female: 59.3%; minoritized race/ethnicity: 10.6%; taking CFTR modulators: 84.2%; advanced illness: 20.9%). In bivariate analyses, females had more palliative care needs, higher symptom burden, and lower quality of life (QOL) than males. AwCF with minoritized race/ethnicity had less modulator use, more hospitalizations, and poorer QOL. Socioeconomic risk factors (SRFs; measured by a composite with 3 SES‐related variables) were associated with more advanced disease, more palliative care needs, poorer QOL, and anxiety. In multivariate models adjusting for modulator treatment and advanced illness, female sex was associated with higher palliative care needs, higher symptom burden, and lower respiratory QOL; having ≥ 2 SRFs was associated with higher needs and lower QOL; and minoritized race/ethnicity was not associated with any of these measures. Conclusions: Female sex and SRFs are independently associated with adults' CF illness burden. Burden associated with race/ethnicity may be mediated by other variables. These vulnerabilities should be investigated further and inform care.

Background: The Hispanic and Latinx community is disproportionately affected by Alzheimer disease and related dementias (ADRDs). In the United States, approximately 8.5 million caregivers of individuals with ADRDs identify as Hispanic and Latinx people, and caregiving-related stress and burden place caregivers at elevated risk for poor mental health outcomes, as well as loneliness and social isolation. To date, there is limited knowledge about the daily stress experiences of Hispanic and Latinx caregivers. Given this knowledge gap, it is critical to examine how personal, cultural, and contextual factors influence daily stress, mental health, and resilience over time among Hispanic and Latinx ADRD caregivers. Objective: The goal of this protocol report is to present the rationale, methodology, planned analytical strategy, progress completed to date, and implications of future findings for “Nuestros Días” (Spanish for “our days”), a fully remote daily diary (DD), observational cohort study examining the day-to-day experiences of Hispanic and Latinx ADRD caregivers. Methods: The study will recruit a cohort of up to 500 Hispanic and Latinx caregivers of individuals living with ADRD. Participants will complete measures assessing contextual, individual-level, and cultural factors at 3 intervals (enrollment, 6 months, and 12 months). Each of the timepoints will be followed by 21 days of DD surveys to report on daily stress, stress moderators, and mental health variables. Results: Data collection began in March 2023 and is projected to end in December 2026. As of March 2024, we have enrolled 60 caregivers in the Nuestros Días study, 78.9% (n=15) of whom are Spanish speakers. The current completion rate for DD surveys is 79.4%, averaging approximately 18 surveys out of 21 completed. We expect to enroll 10 to 15 participants per month moving forward to achieve our enrollment goal. Conclusions: Results from this study will identify which Hispanic and Latinx ADRD caregivers, and under what circumstances, appear to be at the greatest risk of experiencing poor mental health outcomes over time. This study represents a critical step forward in providing key guidance to develop effective, culturally sensitive interventions to support the health and well-being of Hispanic and Latinx ADRD caregivers, a historically underrepresented and underserved population in aging and caregiving research. International Registered Report Identifier (IRRID): DERR1-10.2196/55216

BACKGROUND The Hispanic and Latinx community is disproportionately affected by Alzheimer disease and related dementias (ADRDs). In the United States, approximately 8.5 million caregivers of individuals with ADRDs identify as Hispanic and Latinx people, and caregiving-related stress and burden place caregivers at elevated risk for poor mental health outcomes, as well as loneliness and social isolation. To date, there is limited knowledge about the daily stress experiences of Hispanic and Latinx caregivers. Given this knowledge gap, it is critical to examine how personal, cultural, and contextual factors influence daily stress, mental health, and resilience over time among Hispanic and Latinx ADRD caregivers. OBJECTIVE The goal of this protocol report is to present the rationale, methodology, planned analytical strategy, progress completed to date, and implications of future findings for “Nuestros Días” (Spanish for “our days”), a fully remote daily diary (DD), observational cohort study examining the day-to-day experiences of Hispanic and Latinx ADRD caregivers. METHODS The study will recruit a cohort of up to 500 Hispanic and Latinx caregivers of individuals living with ADRD. Participants will complete measures assessing contextual, individual-level, and cultural factors at 3 intervals (enrollment, 6 months, and 12 months). Each of the timepoints will be followed by 21 days of DD surveys to report on daily stress, stress moderators, and mental health variables. RESULTS Data collection began in March 2023 and is projected to end in December 2026. As of March 2024, we have enrolled 60 caregivers in the Nuestros Días study, 78.9% (n=15) of whom are Spanish speakers. The current completion rate for DD surveys is 79.4%, averaging approximately 18 surveys out of 21 completed. We expect to enroll 10 to 15 participants per month moving forward to achieve our enrollment goal. CONCLUSIONS Results from this study will identify which Hispanic and Latinx ADRD caregivers, and under what circumstances, appear to be at the greatest risk of experiencing poor mental health outcomes over time. This study represents a critical step forward in providing key guidance to develop effective, culturally sensitive interventions to support the health and well-being of Hispanic and Latinx ADRD caregivers, a historically underrepresented and underserved population in aging and caregiving research. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/55216

Context: In the United States, Black nursing home (NH) residents have higher rates of pressure injury (PI) than White residents. Although some studies ascribe this to a relatively high proportion of Black residents in NHs with poor outcomes and limited resources, the factors that associate with PIs and their consequences across and within NHs remain poorly understood. Also, little is known about PIs among residents of differing races and ethnicities. Objectives: Using four national datasets from 2016–2017, we evaluated U.S. NHs to characterize differences in PI-related outcomes among non-Hispanic Whites, non-Hispanic Blacks, Hispanics, Asians, American Indian or Alaska Natives, and Native Hawaiian or Other Pacific Islanders, and clarified the impact of resident-, facility-, and community-level characteristics on these outcomes. Methods: We calculated the annual incidence rate of PIs, the probability of PI healing, and the prevalence of PI-associated pain and analgesic prescription. We determined the bivariate associations between each of these outcomes and race/ethnicity, and between each outcome and multiple potential covariates. Multivariable analyses then evaluated the associations between each outcome and race/ethnicity while adjusting for covariates. Findings: In the bivariate analyses, the annual incidence rate of stage 2, 3, 4, and unstageable PIs for Whites was lower than Blacks and Hispanics, similar to American Indians or Alaska Natives, and higher than Asians and Native Hawaiians or Other Pacific Islanders. In the multivariable analyses, the PI incidence rate ratio was higher only among American Indians or Alaska Natives, and this difference was associated with a NH-level variable—the proportion of racial and ethnic minority residents. Other outcomes did not vary by race/ethnicity. An adjusted exploratory analysis was conducted to help explain the difference between the bivariate and multivariable analyses and revealed an important within-NH difference: Compared to Whites, the PI incidence rate ratios were higher in women who were Black, or American Indian or Alaska Native. Limitations: Our findings are correlational and may be impacted by unevaluated variables and the limitations of administrative data. Implications: In U.S. NHs, the annual incidence rate of PIs varies by race/ethnicity. Facility characteristics strongly influence this variation. Higher incidence rate ratios among racial and ethnic minority residents also are explained by differences within NHs and are striking among subgroups, including female residents who are Black, or American Indian or Alaska Native. Future research should evaluate the sexes separately and explore both across-NH and within-NH differences to determine whether there are structural inequities, bias, and disparate care.

Among people with cystic fibrosis (CF), illness burden is multifaceted, and symptoms may fluctuate in intensity across a lifespan. Caregivers of people with CF may also experience distressing symptoms. Recent developments in CF care, including the availability of highly effective modulator therapies (HEMTs) and new palliative care guidelines promoting palliative care screening may help alleviate symptoms. The objective of this review was to present a narrative view of the recent literature on symptom burden in CF, new screening approaches informed by the Cystic Fibrosis Foundation (CFF) palliative care guidelines, and early data from studies examining the impact of HEMTs on CF symptom burden. A review of the relevant literature was conducted using Google Scholar and PubMed. Included articles covered approaches to burden assessment in CF and other chronic illnesses, epidemiology of CF symptom burden, the impact of HEMTs on symptom burden, and the CFF palliative care guidelines. A primary palliative care model implementing the CFF guidelines was also described. Results of this review show that while recent developments in CF care have led to a reduction in physical symptoms, mental health symptoms remain prevalent. Ongoing screening and triage can ensure that physical symptoms, psychological symptoms, social needs, practical problems, and communication concerns are addressed by care teams.

To prevent or mitigate chronic illness burden, people with cystic fibrosis (pwCF) and their family caregivers need primary (generalist-level) palliative care from the time of diagnosis forward. We used qualitative methods to explore their preferences about a screening-and-triage model (“ Improving Life with CF”) developed to standardize this care. We purposively sampled and interviewed 14 pwCF and caregivers from 5 Improving Life with CF study sites. Thematic analysis was guided by a priori codes using the National Consensus Project's Guidelines for Quality Palliative Care. Participants included 7 adults and 2 adolescents with CF (3 with advanced disease), 4 parents, 1 partner (7 women; 5 people of color). Few were familiar with palliative care. Illness burden was described in multiple domains, including physical (e.g., dyspnea, pain), psychological (e.g., anxiety), and social (e.g., family well-being; impact on work/school). Most preferred survey-based screening with care coordination by the CF team. Preferences for screening approaches varied. PwCF and caregivers experience illness burden and are receptive to a CF-team delivered primary palliative care screening-and-triage model with flexible processes.

Background: The hospice benefit can improve end-of-life outcomes, but is underutilized, particularly in low enrollment states such as New York. Little is known about this underutilization. Objective: The first part of a mixed-methods study aimed to compile and rank barriers to hospice utilization and identify differences between New York and the rest of the United States. Setting/Subjects and Design: Clinicians, administrators, and hospice employees participated in six sessions (6–12 per session) across New York State, USA. During each session, a methodology known as nominal group technique was used to elicit barriers to hospice, identify those specific to New York, and suggest interventions to improve access. The analysis involved first categorizing and ranking barriers, and then conducting a thematic analysis of session transcripts to examine barriers specific to New York and proposed interventions to improve utilization. Results: Fifty-seven participants ranked 54 barriers, which were grouped into nine categories. These reflected concerns about clinician knowledge and attitudes or beliefs; patient and family knowledge, attitudes or beliefs, and resources; and both structural elements and practices of hospices, nursing homes, palliative care services, and other entities in the health care system. Thirteen barriers from eight categories were ranked among the top five by ≥10% of participants; only 10 of the 54 were judged to be specific to New York. Thematic analysis highlighted 14 barriers important in New York and suggested 11 interventions to improve hospice access. Conclusions: A categorization and ranking of barriers may guide future interventions to improve low hospice utilization. Novel studies with heterogeneous stakeholders are needed.