Patients' and Caregivers' Perceptions of Specialty Palliative Care for Amyotrophic Lateral Sclerosis: A Multicenter Evaluation.

Introduction/aims: Specialty palliative care (SPC) aims to optimize quality of life for people with life-limiting illnesses. Previous studies support benefits of SPC for people with amyotrophic lateral sclerosis (pALS) and their caregivers; however, few studies have compared patient and caregiver experiences with ALS care and SPC.

Methods: An online survey assessing satisfaction with care was distributed to pALS and caregivers who had received SPC.

Social Participation Among Older Adults Before and After Long-Term Care Facility Entry.

Importance: Social participation is essential throughout life and is associated with decreased mortality and increased quality of life. It is unknown whether long-term care facility (LTCF) entry disrupts or facilitates it.

Objectives: To determine longitudinal trends in social participation before and after entry into nursing homes (NHs) and assisted living facilities (ALs) and to explore factors associated with participation.

"It may cost you your money, it costs you your life": a framework for financial hardship in dementia.

Background And Objectives: Care for persons with dementia costs ∼ $500 billion annually in the United States. Few qualitative studies or conceptual frameworks of the financial experiences of people impacted by dementia exist. This study examined how patients and caregivers impacted by different types of dementia and at different points in the disease journey described financial issues within a palliative care context.

A Multi-Outcome Prognostic Model for Community-Dwelling Older Adults Admitted to Skilled Nursing Facilities for Post-Acute Care.

Objectives: Nearly 20% of hospitalized older adults are discharged to a skilled nursing facility (SNF) for short-term rehabilitation. Many subsequently experience adverse outcomes, such as hospital readmissions, transitioning to long-term care rather than returning home, or death. To guide shared decision making, we developed a prognostic model for multiple outcomes for older adults admitted to SNFs.

Patient Race and Preferred Language Influence the Use of Physical Restraints in Non-intubated ICU Patients.

Rationale: Physical limb restraints are commonly used in intensive care units (ICUs) to protect patients and staff but are associated with increased morbidity. While many intubated patients in the US are physically restrained, predictors for restraints in non-intubated patients remain less clear.

Objective: To identify whether patient race, ethnicity, and preferred language are associated with restraint use in non-intubated patients across multiple ICUs in a large US hospital system.

Strengths and Opportunities: Clinicians' Perspectives on Palliative Care for Amyotrophic Lateral Sclerosis (ALS) in the United States.

Introduction/aims: Little is known about the state of palliative care (PC) for people with ALS (pALS) in the U.S. We aimed to examine current practice regarding PC for pALS and how it can be improved.

Spiritual Well-Being and Phenoconversion in Huntington's Disease: Analysis from the Prospective Huntington at Risk Observational Study.

Spiritual well-being (SWB) has been shown to delay the onset of cognitive decline among older adults predisposed to Alzheimer's disease and related neurodegenerative dementias. It was, however, unknown if SWB is also associated with delay in disease manifestation ("phenoconversion") in rare, genetic neurodegenerative dementias, such as Huntington's disease (HD). Thus, we sought to evaluate the association between SWB and phenocovnersion in people at-risk for HD.

Hospice Use Among Medicare Beneficiaries With Parkinson Disease and Dementia With Lewy Bodies.

Importance: Neurodegenerative disorders are now the most common reason that Medicare beneficiaries enroll in hospice for end-of-life care. People with all-cause dementia have high rates of suboptimal hospice use, but little is known about hospice use patterns in Lewy body disease, which includes both Parkinson disease (PD) and dementia with Lewy bodies (DLB).

Objective: To compare patient characteristics, hospice agency characteristics, and patterns of use for beneficiaries with PD and DLB vs Alzheimer disease (AD).

"By the Time We Knew …": Poetic Analysis of End-of-Life Caregiving Experiences for Rapidly Progressive and Slower-Duration Dementia Syndromes.

Background: One in three older adults in the United States dies with or from dementia. Little is known about whether end-of-life caregiving experiences differ by dementia diagnosis.

Methods: We conducted a secondary analysis of two qualitative studies.

External Validation of the Walter Index for Posthospitalization Mortality Prediction in Older Adults.

Importance: The Walter Index is a widely used prognostic tool for assessing 12-month mortality risk among hospitalized older adults. Developed in the US in 2001, its accuracy in contemporary non-US contexts is unclear.

Objective: To evaluate the external validity of the Walter Index in predicting posthospitalization mortality risk in Brazilian older adult inpatients.

Mortality and Function After Hip Fracture or Pneumonia in People With and Without Dementia.

Background: The extent to which disruptive surgical or medical events impact mortality and function is critical for anticipatory planning and informing goal-aligned care.

Methods: Using Health and Retirement Study data (2008-2018), we employed propensity score matching to compare the impact of hospitalization for hip fracture (a surgical event) or pneumonia (a medical event) among people with dementia to two groups: (1) people with dementia who did not experience these events; and (2) people without dementia who experienced an event. Dementia status was determined using validated cognitive assessments (Hurd method); hip fracture and pneumonia were identified from Medicare claims.

Cognitive Trajectory Before and After Cataract Surgery: A Population-Based Approach.

Background: Cataract surgery is the most common surgical procedure performed for older US adults. Cataracts are associated with poor cognition and higher rates of dementia, but whether cataract surgery improves cognition for US older adults is not known. We examined the relationship between cataract surgery and long-term change in cognition in the Health and Retirement Study, a population-based study of older US adults linked with Medicare billing data.

"I Aim to Fulfill My Promise": Dementia Caregiving from the Perspective of Spouses and Partners.

In the United States, spouses provide 17% of in-home care for people living with dementia. Negative impacts of dementia care on spouses/partners are well-documented, but we lack information about the holistic experience for spouses/partners. We conducted a secondary thematic analysis of data from two observational studies about everyday music engagement and dementia care at home.

Associations of frailty with survival, hospitalization, functional decline, and toxicity among older adults with advanced non-small cell lung cancer.

Introduction: Among older adults with cancer receiving chemotherapy, frailty indices predict OS and toxicity. Given the increased use of immunotherapy and targeted therapy for advanced non-small cell lung cancer (aNSCLC), we evaluated frailty and Karnofsky Performance Status (KPS) among older adults with aNSCLC receiving chemotherapy, immunotherapy, and/or targeted therapy.

Methods: Patients aged ≥ 65 with aNSCLC starting systemic therapy with non-curative intent underwent geriatric assessments over 6 months.

Unclear Trajectory and Uncertain Benefit: Creating a Lexicon for Clinical Uncertainty in Patients with Critical or Advanced Illness Using a Delphi Consensus Process.

Background: Clinical uncertainty is associated with increased resource utilization, worsened health-related quality of life for patients, and provider burnout, particularly during critical illness. Existing data are limited, because determining uncertainty from notes typically requires manual, qualitative review. We sought to develop a consensus list of descriptors of clinical uncertainty and then, using a thematic analysis approach, describe how respondents consider their use in intensive care unit (ICU) notes, such that future work can extract uncertainty data at scale.

The prevalence of lifetime trauma and association with physical and psychosocial health among adults at the end of life.

Background: National guidelines recognize lifetime trauma as relevant to clinical care for adults nearing the end of life. We determined the prevalence of early life and cumulative trauma among persons at the end of life by gender and birth cohort, and the association of lifetime trauma with end-of-life physical, mental, and social well-being.

Methods: We used nationally representative Health and Retirement Study data (2006-2020), including adults age > 50 who died while enrolled (N = 6495).

Function, cognition, and quality of life among older adults with lung cancer who live alone: A prospective cohort study.

Introduction: Among older adults without cancer, living alone is associated with poor health outcomes. However, among older adults with non-small cell lung cancer (NSCLC) who live alone, data on function, cognition, and quality of life (QOL) during systemic treatment remain limited.

Materials And Methods: We enrolled adults aged ≥65 with advanced NSCLC starting a new chemotherapy, immunotherapy, and/or targeted therapy regimen with non-curative intent.

Mortality and Function After Widowhood Among Older Adults With Dementia, Cancer, or Organ Failure.

Importance: The widowhood effect, in which mortality increases and function decreases in the period following spousal death, may be heightened in older adults with functional impairment and serious illnesses, such as cancer, dementia, or organ failure, who are highly reliant on others, particularly spouses, for support. Yet there are limited data on widowhood among people with these conditions.

Objective: To determine the association of widowhood with function and mortality among older adults with dementia, cancer, or organ failure.

Prognoses Associated With Palliative Performance Scale Scores in Modern Palliative Care Practice.

Importance: The Palliative Performance Scale (PPS) is one of the most widely used prognostic tools for patients with serious illness. However, current prognostic estimates associated with PPS scores are based on data that are over a decade old.

Objective: To generate updated prognostic estimates by PPS score, care setting, and illness category, and examine how well PPS predicts short- and longer-term survival.