Development and Acceptability of a Kidney Therapy Decision Aid for Patients Aged 75 Years and Older: A Design-Based Research Involving Patients, Caregivers, and a Multidisciplinary Team.

Rationale & Objective: Many older adults prefer quality of life over longevity, and some prefer conservative kidney management (CKM) over dialysis. There is a lack of patient-decision aids for adults aged 75 years or older facing kidney therapy decisions, which not only include information on dialysis and CKM but also encourage end-of-life planning. We iteratively developed a paper-based patient-decision aid for older people with low literacy and conducted surveys to assess its acceptability. Study Design: Design-based research. Setting and Participants: Informed by design-based research principles and theory of behavioral activation, a multidisciplinary team of experts created a first version of the patient-decision aid containing 2 components: (1) educational material about kidney therapy options such as CKM, and (2) a question prompt list relevant to kidney therapy and end-of-life decision making. On the basis of the acceptability input of patients and caregivers, separate qualitative interviews of 35 people receiving maintenance dialysis, and with the independent feedback of educated layperson, we further modified the patient-decision aid to create a second version. Analytical Approach: We used descriptive statistics to present the results of acceptability surveys and thematic content analyses for patients' qualitative interviews. Results: The mean age of patients (n=21) who tested the patient-decision aid was 80 years and the mean age of caregivers (n=9) was 70 years. All respondents held positive views about the educational component and would recommend the educational component to others (100% patients and caregivers). Most of the patients reported that the question prompt list helped them put concerns into words (80% patients and 88% caregivers) and would recommend the question prompt list to others (95% patients and 100% caregivers). Limitations: Single-center study. Conclusions: Both components of the patient-decision aid received high acceptability ratings. We plan to launch a larger effectiveness study to test the outcomes of a decision-supporting intervention combining the patient-decision aid with palliative care-based decision coaching.

Reversal of Advanced Directives in Neurologic Emergencies.

Objective: Patients with advanced directives or Medical Orders for Life-Sustaining Treatment (MOLST), including "Do Not Resuscitate" (DNR) and/or "Do Not Intubate" (DNI), may be candidates for procedural interventions when presenting with acute neurologic emergencies. Such interventions may limit morbidity and mortality, but typically they require MOLST reversal. We investigated outcomes of patients with MOLST reversal for treatment of neurologic emergencies. Methods: We conducted a retrospective chart review from July 1, 2019 to April 30, 2021 of patients with MOLST reversal treated in our NeuroMedicine Intensive Care Unit. Variables collected include neurologic disease, MOLST reversal decision maker, procedural interventions, and outcomes. Results: Twenty-seven patients (18 female, median age 78 years (IQR 73-85 years), median baseline modified Rankin score 1 [IQR 0-2.5] were identified with MOLST reversal. The most common pre-procedural MOLST was DNR/DNI (n=22, 81%), and 93% (n=25) pre-procedural MOLSTs were completed by the patient. MOLSTs were reversed by surrogates in n=23 cases (85%). The median time from MOLST completion to MOLST reversal was 603 days (IQR 45 days to 4 years). The most common neurologic emergency was ischemic stroke (n=14, 52%). Most patients died (n=14, 52%), 26% (n=7) were discharged to skilled nursing, and 22% (n=6) returned to home or assisted living. Conclusions: In neurologic emergencies, urgent shared decision making is needed to ensure goal-concordant care, which may result in reversal of existing advanced directives. Outcomes of patients with MOLST reversal were heterogeneous, emphasizing the importance of deliberate patient-centered care weighing the risks and benefits of each intervention.

Symptom burden among individuals with Parkinson disease: A national survey.

OBJECTIVE: To explore disease burden in Parkinson disease (PD) by evaluating the prevalence of symptoms and key disease milestones (critical events, e.g., hospitalization or frequent falls) and their association with quality of life (QOL) in those with PD. METHODS: We created and pretested an online needs assessment survey to evaluate the clinical characteristics, QOL, symptom prevalence, and critical event frequency among those with PD. We recruited individuals with self-reported Hoehn and Yahr stage II-V PD through online postings and email through the Davis Phinney Foundation. We used logistic regression to evaluate the association between a large number of uncontrolled symptoms and events on QOL. RESULTS: A total of 612 individuals (mean age 70.1 years, 49.8% women) completed the survey. Among respondents, 13.6% reported poor QOL. Nearly 20% of respondents reported >3 falls, and 15% of respondents had been hospitalized over the previous 6 months. Participants had an average of 5.1 uncontrolled symptoms, with 86.1% of respondents reporting at least 1 uncontrolled symptom; more than 10% of respondents reported >10 uncontrolled symptoms. Depression, confusion, pain, and bothersome hallucinations were associated with poor QOL among the cohort. CONCLUSIONS: In this national survey of individuals with PD, we identified poor QOL, frequent critical events, and numerous uncontrolled symptoms among a substantial proportion of respondents. Although motor symptoms were common, only nonmotor symptoms were associated with poor QOL. Many of these symptoms and events are treatable or preventable, highlighting the need for better identification and management to improve QOL among those with PD.