Objectives

To understand the facilitators and barriers to hospice staff engagement of patients and surrogates in advance care planning (ACP) conversations.

Design

Qualitative study conducted with purposive sampling and semistructured interviews using ATLAS.ti software to assist with template analysis.

Settings and participants

Participants included 51 hospice professionals (31 clinicians, 13 leaders, and 7 quality improvement administrators) from 4 geographically distinct nonprofit US hospices serving more than 2700 people.

Measures

Interview domains were derived from the implementation science framework of Capability, Opportunity, Motivation, and Behavior (COM-B), with additional questions soliciting recommendations for behavior change. Differences in themes were reconciled by consensus. The facilitator, barrier, and recommendation themes were organized within the COM-B framework.

Results

Capability was facilitated by interdisciplinary teamwork and specified clinical staff roles and inhibited by lack of self-perceived skill in engaging in ACP conversations. Opportunities for ACP occurred during admission to hospice, acute changes, or deterioration in patient condition. Opportunity-related environmental barriers included time constraints such as short patient stay in hospice and workload expectations that prevented clinicians from spending more time with patients and families. Motivation to discuss ACP was facilitated by the employee's goal of providing personalized, patient-centered care. Implicit assumptions about patients' and families' preferences reduced staff's motivation to engage in ACP. Hospice staff made recommendations to improve ACP discussions, including training and modeling practice sessions, earlier introduction of ACP concepts by clinicians in prehospice settings, and increasing workforce diversity to reflect the patient populations the organizations want to reach and cultural competency.

Conclusions and implications

Even hospice staff can be uncomfortable discussing death and dying. Yet staff were able to identify what worked well. Solutions to increase behavior of ACP engagement included staff training and modeling practice sessions, introducing ACP prior to hospice, and increasing workforce diversity to improve cultural competency.

Introduction

Understanding patient preferences for characteristics of treatments facilitates patient participation and doctor-patient communication and enhances patient-centered care. Patient participation is especially important for urethral stricture disease, which has no definitive treatment guidelines favoring either endoscopic incision or open reconstruction, making patient preference an important factor in treatment choice. However, to date, there have been no studies assessing factors that patients value when choosing a treatment option.

Methods

We employ choice-based conjoint analysis to assess patient preferences in the trade-offs of treatment attributes for urethral stricture disease. Male patients undergoing treatment or follow-up examination for urethral stricture disease were recruited through a University Medical Practice. We included 169 patients in the analysis. Six attributes of both risk and benefit were examined: treatment type, success rate, number of future procedures, post-treatment catheter duration, recovery time, and copayment amount.

Results

The treatment success rate was by far the most important attribute. Relative to a 25% success rate (OR = 1) an 85% success rate (OR = 26.72, p<.01) increased patient preference by approximately 27 times. Furthermore, patients are willing to pay a $10,000 copayment to double the success rate from 25% to 50%. Patients demonstrated a strong aversion to time with a urinary catheter. Catheter duration for 1 week or less (OR = .67, p<.01) reduced patient preference by about 1.5 times when compared to requiring no catheter. We also found that patients place low importance on both how invasive the treatment seems and low copayment amounts but are willing to pay $10,000 copayment for an open reconstruction surgery compared with an endoscopic incision procedure.

Conclusion

The findings highlight the importance of shared and detailed physician/patient discussions of all the risk and benefits of each treatment choice and suggest that conjoint analysis may be helpful as a decision aid to guide discussions with individual patients deciding on a treatment.

Background

The approval of new immunotherapies has dramatically changed the treatment landscape of metastatic melanoma. These survival gains come with trade-offs in side effects and costs, as well as important considerations for third-party payer systems, physicians, and patients.

Objective

To develop a Markov model to determine the cost-effectiveness of nivolumab, ipilimumab, and nivolumab-ipilimumab combination as firstline therapy in metastatic melanoma, while accounting for differential effectiveness in programmed death-ligand 1 (PD-L1) positive and negative patients.

Methods

A 3-state Markov model (PD-L1 positive stable disease, PD-L1 negative stable disease, and progression and/or death) was developed using a U.S. societal perspective with a lifetime time horizon of 14.5 years. Transition probabilities were calculated from progression-free (PF) survival data reported in the CheckMate-067 trial. Costs were expressed in 2015 U.S. dollars and were determined using national sources. Adverse event (AE) management was determined using immune-related AE (irAE) data from CheckMate-067, irAE management guides for nivolumab and ipilimumab, and treatment guidelines. Utilities were obtained from published literature, using melanoma-specific studies when available, and were weighted based on incidence and duration of irAEs. Base case, one-way sensitivity, and probabilistic sensitivity analyses were conducted.

Results

Nivolumab-ipilimumab combination therapy was not the cost-effective choice ($454,092 per PF quality-adjusted life-year [QALY]) compared with nivolumab monotherapy in a base case analysis at a willingness-to-pay threshold of $100,000 per PFQALY. Combination therapy and nivolumab monotherapy were cost-effective choices compared with ipilimumab monotherapy. PD-L1 positive status, utility of nivolumab and combination therapy, and medication costs contributed the most uncertainty to the model. In a population of 100% PD-L1 negative patients, nivolumab was still the optimal treatment, but combination therapy had an improved incremental cost-effectiveness ratio (ICER) of $295,903 per PFQALY. Combination therapy became dominated by nivolumab, when 68% of the sample was PD-L1 positive. In addition, the cost of ipilimumab would have to decrease to < $21,555 per dose for combination therapy to have an ICER < $100,000 per PFQALY and to < $19,151 (a 42% reduction) to be more cost-effective than nivolumab monotherapy.

Conclusions

Nivolumab-ipilimumab combination therapy was not cost-effective compared with nivolumab monotherapy, which was the most cost-effective option. Professionals in managed care settings should consider the pharmacoeconomic implications of these new immunotherapies as they make value-based formulary decisions, and future cost-effectiveness studies are completed.

Disclosures

No funding supported this study. Merino was a contractor with EMD Serono at the time of this study but does not have any conflicts of interest and did not receive any funding related to this study. All other authors have no financial disclosures and no conflicts of interest. All the authors contributed to the study concept and design. Tran, McDowell, and Barcelon took the lead in data collection, along with Oh, Keyvani, and Merino. All authors except Merino contributed to data interpretation. The manuscript was written by Oh, Tran, McDowell, and Wilson and revised by Oh, Tran, McDowell, Wilson, and Keyvani. This analysis was presented at Academy of Managed Care Pharmacy Managed Care & Specialty Pharmacy Annual Meeting 2016, April 19-22, 2016, in San Francisco, California, and at the International Society for Pharmacoeconomics and Outcomes Research Annual International Meeting, May 21-25, 2016, in Washington DC.

Objectives

To identify participants living at home and to estimate the risk of their transition into an institutional setting.

Design

Prospective cohort study from the National Health and Aging Trends Study (NHATS), a nationally representative survey of US adults aged 65 and older.

Setting

US national sample.

Participants

A total of 4712 NHATS participants were living at home in 2011. Residential transitions were described every year through 2017.

Measurements

The primary outcome was transition time into an institutional setting. Primary predictors were social support factors (living spouse, lives with others, presence of social network, and participation in social activities). Covariates included age, sex, race, cognitive status, functional disability, multimorbidity, and Medicaid enrollment. A Fine and Gray hazards model estimated the risk of transition into an institutional setting, with death before institutionalization considered a competing risk.

Results

In 2011, 4712 NHATS participants were living at home (78 ± 8 y; 57% female; 80% white; 10% probable dementia; 7% with three or more activities of daily living disabilities). By 2017, 58% remained at home, 17% had either transitioned to an institution or died in an institution, and 25% died before institutionalization. In multivariable analyses that adjusted for age, sex, race, cognitive status, functional disability, multimorbidity, and Medicaid enrollment, participants were more likely to move out of the home into an institution if they had no social network (0 vs three or more people; subhazard ratio [sHR] = 1.8; 95% confidence interval [CI] = 1.2-2.5; P = .003) or lived alone (sHR = 1.9; 95% CI = 1.6-2.2; P < .0001). Older adults who enjoyed going to the movies, dinner, or the casino and visiting family or friends had a lower probability of institutionalization compared with participants who did not enjoy these activities or did not visit family or friends (adjusted sHR = .7; 95% CI = .6-.9; adjusted sHR = .7; 95% CI = .6-.9, respectively).

Conclusion

Policy initiatives should target older adults with limited social support to reduce the risk of moving from home into an institution. J Am Geriatr Soc 67:2622-2627, 2019.

Background

Participation and active engagement in meaningful activities support the emotional and physical well-being of older adults. In 2020, the onset of the COVID-19 pandemic altered lives, including the ability to participate in meaningful activities. This study compared meaningful activity engagement before and at the beginning of the COVID-19 pandemic in a nationally representative, diverse sample >65 years between 2015 and 2020.

Methods

We described the proportions and characteristics of National Health and Aging Trends Study participants and their engagement in four activities: visiting friends or family, attending religious services, participating in clubs/classes/other organized activities, and going out for enjoyment. We used mixed effects logistic regressions to compare probabilities of activity engagement before 2020 and in 2020, adjusting for age, sex, functional status, income, geographic region, anxiety-depression, and transportation issues.

Results

Of 6815 participants in 2015, the mean age was 77.7 (7.6) years; 57% of participants were female; 22% were Black, 5% Hispanic, 2% were American Indian, and 1% were Asian; 20% had disability; and median income was $33,000. Participation in all four activities remained consistent between 2015 and 2019 and declined in 2020. Significant differences existed in attending religious services (p < 0.01) and going out for enjoyment (p < 0.001) by race and ethnicity, before and after the start of COVID-19. Black and Hispanic participants experienced the largest decline in attending religious services (-32%, -28%) while Asian and White participants experienced the largest decline in going out for enjoyment (-49%, -56%).

Conclusions

Potential quality of life tradeoffs should be considered to a greater extent in future pandemic emergencies.

Background

Over the past decade, medical care has shifted from institutions into home settings-particularly among persons with dementia. Yet it is unknown how home-based clinical services currently support persons with dementia, and what factors shape access.

Methods

Using the National Health and Aging Trends Study linked to Medicare claims 2012-2017, we identified 6664 community-dwelling adults age ≥ 70 years enrolled in fee-for-service Medicare. Annual assessment of dementia status was determined via self-report, cognitive interview, and/or proxy assessment. Receipt of four types of home-based clinical care (home-based medical care (HBMC) (i.e., nurse practitioner, physician, or physician assistant visits), skilled home health care (SHHC), podiatry visits, and other types of home-based clinical services (e.g., behavioral health)) was assessed annually. We compared age-adjusted rates of home-based clinical care by dementia status and determined sociodemographic, health, and environmental characteristics associated with utilization of home-based clinical care among persons with dementia.

Results

Nearly half (44.4%) of persons with dementia received any home-based clinical care annually compared to only 14.4% of those without dementia. Persons with dementia received substantially more of each type of home-based clinical care than those without dementia including a 5-fold increased use of HBMC (95% CI = 3.8-6.2) and double the use of SHHC (95% CI = 2.0-2.5). In adjusted models, Hispanic/Latino persons with dementia were less likely to receive HBMC (OR = 0.32; 95% CI = 0.11-0.93). Use of HBMC, podiatry, and other home-based clinical care was significantly more likely among those living in residential care facilities, in the Northeast and in metropolitan areas.

Conclusion

Although almost half of community-dwelling persons with dementia receive home-based clinical care, there is significant variation in utilization based on race/ethnicity and environmental context. Increased understanding as to how these factors impact utilization is necessary to reduce potential inequities in healthcare delivery among the dementia population.

Objectives

To examine how people living with dementia at home engage in meaningful activities, a critical component of quality of life.

Design

Ethnographic study design using semistructured interviews, participant-observation, and ethnographic analysis.

Setting and participants

Home setting. People living with dementia were recruited through 3 geriatrics programs in the San Francisco Bay Area, along with 1 primary live-in care partner for each. Participants were purposively sampled to maximize heterogeneity of dementia severity and life experience.

Measurements

We asked participants to self-identify and report meaningful activity engagement prior to dementia onset and during the study period using a structured questionnaire, semistructured dyadic interviews, and observed engagement in activities. Home visits were audio-recorded, transcribed, and inductively analyzed using thematic analysis.

Results

Twenty-one people living with dementia (mean age 84 years, 38% women) and 20 care partners (59 years, 85% women), including 40% professionals, 35% spouse/partners, and 15% adult children. Overarching theme: specific activities changed over time but underlying sources of meaning and identity remained stable. As dementia progressed, meaningful activity engagement took 3 pathways. Pathway 1: Activities continued with minimal adaptation when engagement demanded little functional or cognitive ability (eg, watching football on TV). Pathway 2: care partners adapted or replaced activities when engagement required greater functional or cognitive abilities (eg, traveling overseas). This pathway was associated with caregiving experience, nursing training, and strong social support structures. Pathway 3: care partners discontinued meaningful activity engagement. Discontinuation was associated with severe caregiver burden, coupled with illness, injury, or competing caregiving demands severe enough to impact their ability to facilitate activities.

Conclusions and implications

For people living with dementia at home, underlying sources of meaning and identity remains stable despite changes in meaningful activity engagement. Many of the factors associated with adaptation vs discontinuation over time are modifiable and can serve as targets for intervention.

Abstract: Surgical interventions are common among seriously ill older patients, with nearly one-third of older Americans facing surgery in their last year of life. Despite the potential benefits of palliative care among older surgical patients undergoing high-risk surgical procedures, palliative care in this population is underutilized and little is known about potential disparities by race/ethnicity and how frailty my affect such disparities. The aim of this study was to examine disparities in palliative care consultations by race/ethnicity and assess whether patients’ frailty moderated this association. Drawing on a retrospective cross-sectional study of inpatient surgical episodes using the National Inpatient Sample of the Healthcare Cost and Utilization Project from 2005 to 2019, we found that frail Black patients received palliative care consultations least often, with the largest between-group adjusted difference represented by Black–Asian/Pacific Islander frail patients of 1.6 percentage points, controlling for sociodemographic, comorbidities, hospital characteristics, procedure type, and year. No racial/ethnic difference in the receipt of palliative care consultations was observed among nonfrail patients. These findings suggest that, in order to improve racial/ethnic disparities in frail older patients undergoing high-risk surgical procedures, palliative care consultations should be included as the standard of care in clinical care guidelines.