Palliative care and Parkinson's disease : meeting summary and recommendations for clinical research

Introduction: Palliative care is an approach to caring for patients and families affected by serious illnesses that focuses on the relief of suffering through the management of medical symptoms, psychosocial issues, advance care planning and spiritual wellbeing. Over the past decade there has been an emerging clinical and research interest in the application of palliative care approaches to Parkinson’s disease (PD) and outpatient palliative care services are now offered by several movement disorders centers. Methods: An International Working Group Meeting on PD and Palliative Care supported by the Parkinson’s Disease Foundation was held in October 2015 to review the current state of the evidence and to make recommendations for clinical research and practice. Results: Topics included: 1) Defining palliative care for PD; 2) Lessons from palliative care for heart failure and other chronic illnesses; 3) Patient and caregiver Needs; 4) Needs assessment tools; 5) Intervention strategies; 6) Predicting prognosis and hospice referrals; 7) Choice of appropriate outcome measures; 8) Implementation, dissemination and education research; and 9) Need for research collaborations. We provide an overview of these discussions, summarize current evidence and practices, highlight gaps in our knowledge and make recommendations for future research. Conclusions: Palliative Care for PD is a rapidly growing area which holds great promise for improving outcomes for PD patients and their caregivers. While clinical research in this area can build from lessons learned in other diseases, there is a need for observational, methodological and interventional research to address the unique needs of PD patients and caregivers

Adherence to

(MWM) for palliative care has prioritized data collection efforts for evaluating quality in clinical practice. How these measures can be implemented across diverse clinical settings using point-of-care data collection on quality is unknown.To evaluate the implementation of MWM measures by exploring documentation of quality measure adherence across six diverse clinical settings inherent to palliative care practice.We deployed a point-of-care quality data collection system, the Quality Data Collection Tool, across five organizations within the Palliative Care Research Cooperative Group. Quality measures were recorded by clinicians or assistants near care delivery.During the study period, 1989 first visits were included for analysis. Our population was mostly white, female, and with moderate performance status. About half of consultations were seen on hospital general floors. We observed a wide range of adherence. The lowest adherence involved comprehensive assessments during the first visit in hospitalized patients in the intensive care unit (2.71%); the highest adherence across all settings, with an implementation of >95%, involved documentation of management of moderate/severe pain. We observed differences in adherence across clinical settings especially with MWM Measure #2 (Screening for Physical Symptoms, range 45.7%–81.8%); MWM Measure #5 (Discussion of Emotional Needs, range 46.1%–96.1%); and MWM Measure #6 (Documentation of Spiritual/Religious Concerns, range 0–69.6%).Variations in clinician documentation of adherence to MWM quality measures are seen across clinical settings. Additional studies are needed to better understand benchmarks and acceptable ranges for adherence tailored to various clinical settings

Acceptability, Feasibility, and Efficacy Potential of a Multimodal Acceptance and Commitment Therapy Intervention to Address Psychosocial and Advance Care Planning Needs among Anxious and Depressed Adults with Metastatic Cancer

Background: Adults with metastatic cancer frequently report anxiety and depression symptoms, which may impact health behaviors such as advance care planning (ACP). Objective: The study leveraged acceptance and commitment therapy (ACT), an evidence-based approach for reducing distress and improving health behaviors, and adapted it into a multimodal intervention (M-ACT) designed to address the psychosocial and ACP needs of anxious and depressed adults with metastatic cancer. The study evaluated M-ACT\u27s acceptability, feasibility, and efficacy potential. Design: The study was designed as a single-arm intervention development and pilot trial. Setting/Subjects: The trial enrolled 35 anxious or depressed adults with stage IV cancer in community oncology clinics, with a referred-to-enrolled rate of 69% and eligible-to-enrolled rate of 95%. Measurements: M-ACT alternated four in-person group sessions with three self-paced online sessions. Acceptability and feasibility were assessed through enrollment, attendance, and satisfaction ratings. Outcomes and theorized intervention mechanisms were evaluated at baseline, midintervention, postintervention, and two-month follow-up. Results: Participant feedback was used to refine the intervention. Of participants starting the intervention, 92% completed, reporting high satisfaction. One-quarter did not begin M-ACT due to health declines, moving, or death. Completers showed significant reductions in anxiety, depression, and fear of dying and increases in ACP and sense of life meaning. In this pilot, M-ACT showed no significant impact on pain interference. Increases in two of three mechanism measures predicted improvement on 80% of significant outcomes. Conclusions: The M-ACT intervention is feasible, acceptable, and shows potential for efficacy in community oncology settings; a randomized trial is warranted

Strategies to Support Recruitment of Patients With Life-Limiting Illness for Research: The Palliative Care Research Cooperative Group

The Palliative Care Research Cooperative group (PCRC) is the first clinical trials cooperative for palliative care in the United States

Real-Time Electronic Health Record Mortality Prediction During the COVID-19 Pandemic: A Prospective Cohort Study

Background: The SARS-CoV-2 virus has infected millions of people, overwhelming critical care resources in some regions. Many plans for rationing critical care resources during crises are based on the Sequential Organ Failure Assessment (SOFA) score. The COVID-19 pandemic created an emergent need to develop and validate a novel electronic health record (EHR)-computable tool to predict mortality. Research Questions: To rapidly develop, validate, and implement a novel real-time mortality score for the COVID-19 pandemic that improves upon SOFA. Study Design and Methods: We conducted a prospective cohort study of a regional health system with 12 hospitals in Colorado between March 2020 and July 2020. All patients >14 years old hospitalized during the study period without a do not resuscitate order were included. Patients were stratified by the diagnosis of COVID-19. From this cohort, we developed and validated a model using stacked generalization to predict mortality using data widely available in the EHR by combining five previously validated scores and additional novel variables reported to be associated with COVID-19-specific mortality. We compared the area under the receiver operator curve (AUROC) for the new model to the SOFA score and the Charlson Comorbidity Index. Results: We prospectively analyzed 27,296 encounters, of which 1,358 (5.0%) were positive for SARS-CoV-2, 4,494 (16.5%) included intensive care unit (ICU)-level care, 1,480 (5.4%) included invasive mechanical ventilation, and 717 (2.6%) ended in death. The Charlson Comorbidity Index and SOFA scores predicted overall mortality with an AUROC of 0.72 and 0.90, respectively. Our novel score predicted overall mortality with AUROC 0.94. In the subset of patients with COVID-19, we predicted mortality with AUROC 0.90, whereas SOFA had AUROC of 0.85. Interpretation: We developed and validated an accurate, in-hospital mortality prediction score in a live EHR for automatic and continuous calculation using a novel model, that improved upon SOFA. Study Question: Can we improve upon the SOFA score for real-time mortality prediction during the COVID-19 pandemic by leveraging electronic health record (EHR) data? Results: We rapidly developed and implemented a novel yet SOFA-anchored mortality model across 12 hospitals and conducted a prospective cohort study of 27,296 adult hospitalizations, 1,358 (5.0%) of which were positive for SARS-CoV-2. The Charlson Comorbidity Index and SOFA scores predicted all-cause mortality with AUROCs of 0.72 and 0.90, respectively. Our novel score predicted mortality with AUROC 0.94. Interpretation: A novel EHR-based mortality score can be rapidly implemented to better predict patient outcomes during an evolving pandemic

Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel

Despite increasing interest in advance care planning (ACP) and prior ACP descriptions, a consensus definition does not yet exist to guide clinical, research, and policy initiatives

Would you be surprised if this patient died?: Preliminary exploration of first and second year residents' approach to care decisions in critically ill patients

BACKGROUND: How physicians approach decision-making when caring for critically ill patients is poorly understood. This study aims to explore how residents think about prognosis and approach care decisions when caring for seriously ill, hospitalized patients. METHODS: Qualitative study where we conducted structured discussions with first and second year internal medicine residents (n = 8) caring for critically ill patients during Medical Intensive Care Unit Ethics and Discharge Planning Rounds. Residents were asked to respond to questions beginning with "Would you be surprised if this patient died?" RESULTS: An equal number of residents responded that they would (n = 4) or would not (n = 4) be surprised if their patient died. Reasons for being surprised included the rapid onset of an acute illness, reversible disease, improving clinical course and the patient's prior survival under similar circumstances. Residents reported no surprise with worsening clinical course. Based on the realization that their patient might die, residents cited potential changes in management that included clarifying treatment goals, improving communication with families, spending more time with patients and ordering fewer laboratory tests. Perceived or implied barriers to changes in management included limited time, competing clinical priorities, "not knowing" a patient, limited knowledge and experience, presence of diagnostic or prognostic uncertainty and unclear treatment goals. CONCLUSIONS: These junior-level residents appear to rely on clinical course, among other factors, when assessing prognosis and the possibility for death in severely ill patients. Further investigation is needed to understand how these factors impact decision-making and whether perceived barriers to changes in patient management influence approaches to care

Safety and Benefit of Discontinuing Statin Therapy in the Setting of Advanced, Life-Limiting Illness: A Randomized Clinical Trial

For patients with limited prognosis, some medication risks may outweigh the benefits, particularly when benefits take years to accrue; statins are one example. Data are lacking regarding the risks and benefits of discontinuing statin therapy for patients with limited life expectancy

Palliative and end-of-life care research in Scotland 2006-2015: A systematic scoping review

Background: The Scottish Government set out its 5-year vision to improve palliative care in its Strategic Framework for Action 2016–2021. This includes a commitment to strengthening research and evidence based knowledge exchange across Scotland. A comprehensive scoping review of Scottish palliative care research was considered an important first step. The aim of the review was to quantify and map palliative care research in Scotland over the ten-year period preceding the new strategy (2006–15). Methods: A systematic scoping review was undertaken. Palliative care research involving at least one co-author from a Scottish institution was eligible for inclusion. Five databases were searched with relevant MeSH terms and keywords; additional papers authored by members of the Scottish Palliative and End of Life Care Research Forum were added. Results: In total, 1919 papers were screened, 496 underwent full text review and 308 were retained in the final set. 73% were descriptive studies and 10% were interventions or feasibility studies. The top three areas of research focus were services and settings; experiences and/or needs; and physical symptoms. 58 papers were concerned with palliative care for people with conditions other than cancer – nearly one fifth of all papers published. Few studies focused on ehealth, health economics, out-of-hours and public health. Nearly half of all papers described unfunded research or did not acknowledge a funder (46%). Conclusions: There was a steady increase in Scottish palliative care research during the decade under review. Research output was strong compared with that reported in an earlier Scottish review (1990–2005) and a similar review of Irish palliative care research (2002–2012). A large amount of descriptive evidence exists on living and dying with chronic progressive illness in Scotland; intervention studies now need to be prioritised. Areas highlighted for future research include palliative interventions for people with non-malignant illness and multi-morbidity; physical and psychological symptom assessment and management; interventions to support carers; and bereavement support. Knowledge exchange activities are required to disseminate research findings to research users and a follow-up review to examine future research progress is recommended