An Exploratory Qualitative Study of Patient and Caregiver Perspectives of Ambulatory Kidney Palliative Care.

OBJECTIVES: The ideal clinical model to deliver palliative care to patients with advanced kidney disease is currently unknown. Internationally, ambulatory kidney palliative care clinics have emerged with positive outcomes, yet there is limited data from the United States (US). In this exploratory study we report perceptions of a US-based ambulatory kidney palliative care clinic from the perspective of patient and caregiver attendees. The objective of this study was to inform further improvement of our clinical program. METHODS: Semi-structured interviews were conducted to elicit the patient and caregiver experience. Eleven interviews (8 patients with chronic kidney disease stage IV or V and 3 caregivers) were analyzed using qualitative description design. RESULTS: We identified 2 themes: "Communication addressing the emotional and physical aspects of disease" and "Filling gaps in care"; Subthemes include perceived value in symptom management, assistance with coping with disease, engagement in advance care planning, program satisfaction and patient activation. SIGNIFICANCE OF RESULTS: Qualitative analysis showed that attendees of an ambulatory kidney palliative care clinic found the clinic enhanced the management of their kidney disease and provided services that filled current gaps in their care. Shared experiences highlight the significant challenges of life with kidney disease and the possible benefits of palliative care for this population. Further study to determine the optimal model of care for kidney palliative care is needed. Inclusion of the patient and caregiver perspective will be essential in this development.

A Descriptive Analysis of an Ambulatory Kidney Palliative Care Program.

Background: Many patients with serious kidney disease have an elevated symptom burden, high mortality, and poor quality of life. Palliative care has the potential to address these problems, yet nephrology patients frequently lack access to this specialty. Objectives: We describe patient demographics and clinical activities of the first 13 months of an ambulatory kidney palliative care (KPC) program that is integrated within a nephrology practice. Design/Measurements: Utilizing chart abstractions, we characterize the clinic population served, clinical service utilization, visit activities, and symptom burden as assessed using the Integrated Palliative Care Outcome Scale-Renal (IPOS-R), and patient satisfaction. Results: Among the 55 patients served, mean patient age was 72.0 years (standard deviation [SD] = 16.7), 95% had chronic kidney disease stage IV or V, and 46% had a Charlson Comorbidity Index >8. The mean IPOS-R score at initial visit was 16 (range = 0-60; SD = 9.1), with a mean of 7.5 (SD = 3.7) individual physical symptoms (range = 0-15) per patient. Eighty-seven percent of initial visits included an advance care planning conversation, 55.4% included a medication change for symptoms, and 35.5% included a dialysis decision-making conversation. Overall, 96% of patients who returned satisfaction surveys were satisfied with the care they received and viewed the KPC program positively. Conclusions: A model of care that integrates palliative care with nephrology care in the ambulatory setting serves high-risk patients with serious kidney disease. This KPC program can potentially meet documented gaps in care while achieving patient satisfaction. Early findings from this program evaluation indicate opportunities for enhanced patient-centered palliative nephrology care.

"Against Medical Advice" Discharges Among HIV-Infected Patients: Health and Health Services Outcomes.

Nurses are often first to identify and manage a patient leaving against medical advice (AMA), and so they are critical contributors to the development of strategies to address this problem. We studied AMA discharge in order to help develop useful interventions. We performed a cross-sectional analysis of 55,938 discharges from a single urban hospital for the years 2002-2003 and 2012-2013. AMA discharge rates were higher for HIV-infected patients than for patients with alcohol-related disorders or sickle cell anemia in both time periods, even after adjustment for age, race, sex, insurance status, and household income. For HIV infection, 25% of AMA discharges occurred in patients with multiple AMA discharges and 30-day readmission rates were higher after an AMA discharge: odds ratio 1.57 (95% confidence interval 1.01 to 2.43, p = .046). Team-based and nursing interventions that incorporate the treatment-based values and preferences of HIV-infected patients with prior AMA discharges may improve linkage to care and reduce readmissions.

The role of patient-provider interactions: Using an accounts framework to explain hospital discharges against medical advice.

The phenomenon of leaving the hospital against medical advice (AMA) despite being quite common and associated with significant deleterious health outcomes remains inadequately understood and addressed. Researchers have identified certain patient characteristics as predictors of AMA discharges, but the patients' reasons for these events have not been comprehensively explored. Moreover, because the medical authority model dominates this research area, providers' experiences of AMA discharges remain unstudied. We examined the AMA discharge from a patient-centered perspective by analyzing the content of notes providers generate to record such events. We analyzed providers' notes for all inpatients with a primary HIV diagnosis (N = 33) that, in 2012, left an urban hospital AMA. Applying the Scott and Lyman accounts framework, we identified that the notes constituted records of providers' and patients' excuses and justifications for failing to meet the expectations of a provider offering patient-centered care and a compliant patient receiving care. Alongside the patients' reasons for leaving AMA, the notes also revealed the providers' reasons for honoring or discrediting the patients' accounts. The style of the accounts and the professional status of the notes' authors enabled us to contextualize the production and sharing of AMA notes in the hospital hierarchy. Conceptualizing AMA notes as dyadic accounts elicited specific factors that challenge the patient-provider relationship, and generated insights on how to strengthen it, and thus decrease the rates of AMA discharges and their associated health effects.

Fracture Prediction With Modified-FRAX in Older HIV-Infected and Uninfected Men.

BACKGROUND: FRAX is a validated, computer-based clinical fracture risk calculator that estimates the 10-year risk of major osteoporotic (clinical spine, forearm, hip, or shoulder) fracture, and hip fracture alone. It is widely used for decision making in fracture prevention, but it may underestimate the risk in HIV-infected individuals. Some experts recommend considering HIV as a cause of secondary osteoporosis when calculating FRAX in HIV-infected individuals. METHODS: From the Veterans Aging Cohort Study Virtual Cohort, we included 24,451 HIV-infected and uninfected men aged 50-70 years with complete data in the year 2000 to approximate all but 2 factors (ie, history of secondary osteoporosis and parental hip fracture) for modified-FRAX calculation without bone density and 10-year observational data for incident fragility fracture. The accuracy of the modified-FRAX calculation was compared by the observed/estimated (O/E) ratios of fracture by HIV status. RESULTS: The accuracy of modified-FRAX was less for HIV-infected [O/E = 1.62, 95% confidence interval (CI) 1.45 to 1.81] than uninfected men (O/E = 1.29, 95% CI: 1.19 to 1.40), but improved when HIV was included as a cause of secondary osteoporosis (O/E = 1.20, 95% CI: 1.08 to 1.34). However, only 3%-6% of men with incident fractures were correctly identified by the modified-FRAX using accepted FRAX thresholds for pharmacologic therapy. CONCLUSIONS: Modified-FRAX underestimated the fracture rates more in older HIV-infected than in otherwise similar uninfected men. The accuracy improved when HIV was included as a cause of secondary osteoporosis, but it still performed poorly for case finding. Further studies are necessary to determine how to use FRAX or define an HIV-specific index to risk stratify for screening and treatment in older HIV-infected individuals.