The National Institutes of Health National Heart, Lung, and Blood Institute convened a working group in March 2008 to discuss how therapies for heart failure (HF) might be best advanced using ...clinical trials involving left ventricular assist devices (LVAD). This group opined that the field was ready for a trial to assess the use of long-term ventricular assist device therapy in patients who are less ill than patients currently eligible for destination therapy, which resulted in the Randomized Evaluation of VAD InterVEntion before Inotropic Therapy (REVIVE-IT) pilot study. The specific objective of REVIVE-IT was to compare LVAD therapy with optimal medical management in patients with less advanced HF than current LVAD indications to determine if wider application of permanent LVAD use to less ill patients would be associated with improved survival, quality of life, or functional capacity. REVIVE-IT represented an extraordinary effort to provide data from a randomized clinical trial to inform clinicians, scientists, industry, and regulatory agencies about the efficacy and safety of LVAD therapy in a population with less advanced HF. Despite significant support from the medical community, industry, and governmental agencies, REVIVE-IT failed to accomplish its goal. The reasons for its failure are instructive, and the lessons learned from the REVIVE-IT experience are likely to be relevant to any future study of LVAD therapy in a population with less advanced HF.
Abstract Context Successful and sustained integration of palliative care into the intensive care unit (ICU) requires the active engagement of bedside nurses. Objectives To describe the perspectives ...of ICU bedside nurses on their involvement in palliative care communication. Methods A survey was designed, based on prior work, to assess nurses' perspectives on palliative care communication, including the importance and frequency of their involvement, confidence, and barriers. The 46-item survey was distributed via e-mail in 2013 to bedside nurses working in ICUs across the five academic medical centers of the University of California, U.S. Results The survey was sent to 1791 nurses; 598 (33%) responded. Most participants (88%) reported that their engagement in discussions of prognosis, goals of care, and palliative care was very important to the quality of patient care. A minority reported often discussing palliative care consultations with physicians (31%) or families (33%); 45% reported rarely or never participating in family meeting discussions. Participating nurses most frequently cited the following barriers to their involvement in palliative care communication: need for more training (66%), physicians not asking their perspective (60%), and the emotional toll of discussions (43%). Conclusion ICU bedside nurses see their involvement in discussions of prognosis, goals of care, and palliative care as a key element of overall quality of patient care. Based on the barriers participants identified regarding their engagement, interventions are needed to ensure that nurses have the education, opportunities, and support to actively participate in these discussions.
Abstract Context As endorsed by the palliative care “Measuring What Matters” initiative, capturing patients' direct assessment of their care is essential for ongoing quality reporting and ...improvement. Fostering an environment where seriously ill patients feel heard and understood is of crucial importance to modern health care. Objectives To describe the development and performance of a self-report field measure for seriously ill patients to report how well they feel heard and understood in the hospital environment. Methods As part of a larger ongoing cohort study of inpatient palliative care, we developed and administered the following point-of-care item: “Over the past two days, how much have you felt heard and understood by the doctors, nurses and hospital staff?” (completely, quite a bit, moderately, slightly, not at all). Participants completed the measure before and the day after palliative care consultation. For the postconsultation version, we changed the time frame from “past two days” to “today.” Results One hundred sixty patients with advanced cancer completed the preconsultation assessment, and 87% of them completed the postconsultation version. Responses encompassed full use of the ordinal scale, did not exhibit ceiling or floor effects, and showed improvement from preassessment to postassessment. The item was quick to administer and easy for patients to complete. Conclusion The “Heard & Understood” item is a promising self-report quality measure for the inpatient palliative care setting.
ABSTRACT Purpose Although barriers to shared decision making in intensive care units are well documented, there are currently no easily scaled interventions to overcome these problems. We sought to ...assess stakeholders’ perceptions of the acceptability, usefulness, and design suggestions for a tablet-based tool to support communication and shared decision making in ICUs. Methods We conducted in-depth semi-structured interviews with 58 key stakeholders (30 surrogates and 28 ICU care providers). Interviews explored stakeholders’ perceptions about the acceptability of a tablet-based tool to support communication and shared decision making, including the usefulness of modules focused on orienting families to the ICU, educating them about the surrogate’s role, completing a question prompt list, eliciting patient values, educating about treatment options, eliciting perceptions about prognosis, and providing psychosocial support resources. The interviewer also elicited stakeholders’ design suggestions for such a tool. We used constant comparative methods to identify key themes that arose during the interviews Results Overall, 95% (55/58) of participants perceived the proposed tool to be acceptable, with 98% (57/58) of interviewees finding six or more of the seven content domains acceptable. Stakeholders identified several potential benefits of the tool including that it would help families prepare for the surrogate role and for family meetings as well as give surrogates time and a framework to think about the patient’s values and treatment options. Key design suggestions included: conceptualize the tool as a supplement to rather than a substitute for surrogate-clinician communication; make the tool flexible with respect to how, where, and when surrogates can access the tool; incorporate interactive exercises; use video and narration to minimize the cognitive load of the intervention; and build an extremely simple user interface to maximize usefulness for individuals with low computer literacy. Conclusion There is broad support among stakeholders for the use of a tablet-based tool to improve communication and shared decision making in ICUs. Eliciting the perspectives of key stakeholders early in the design process yielded important insights to create a tool tailored to the needs of surrogates and care providers in ICUs.
Abstract Purpose The objectives were to describe the decision-making preferences of relatives (family members) of patients in intensive care units (ICUs), to determine whether the relatives had ...symptoms of anxiety and depression while the patients were in the ICU, and to determine whether there was a relationship between the relatives' preferences and symptoms. Methods In our observational pilot study of relatives in a quaternary care teaching hospital, we administered the Control Preferences Scale to assess decision-making preferences and the Hospital Anxiety and Depression Scale to determine whether anxiety and depression were present. Results Of 50 relatives enrolled in the study, 48 indicated decision-making preferences; 12 (25%) preferred an active role, 28 (58%) preferred to share responsibility with the doctor, and 8 (17%) preferred a passive role. Of the 50 relatives, 21 (42%) had symptoms of anxiety, and 8 (16%) had symptoms of depression. In the groups that preferred an active role, shared role, and passive role, respectively, the anxiety rates were 42%, 25%, and 88% ( P = .007), and depression rates were 8%, 11%, and 50% ( P = .026). Conclusions The relatives who preferred a passive decision-making role were the most likely to be anxious and depressed.
Although radiation therapy improves locoregional control and survival for inflammatory breast cancer (IBC), it is underused in this population. The purpose of this study was to identify variables ...associated with the underuse of postmastectomy radiation therapy (PMRT) for IBC.
Using the 1998 to 2011 National Cancer Data Base, we identified 8273 women who underwent mastectomy for nonmetastatic IBC. We used logistic regression modeling to determine the demographic, tumor, and treatment variables associated with the underuse of PMRT.
Although the use of PMRT increased over time, a total of 30.3% of our cohort did not receive PMRT. On multivariate analysis, variables associated with the underuse of PMRT for IBC included the following (all P<.05): Medicare insurance (odds ratio OR = 0.70), annual income <$34,999 (<$30,000: OR=0.79; $30,000-$34,999: OR=0.82), cN2 and cN0 disease (cN2: OR=0.71; cN0: OR=0.63), failure to receive chemotherapy and hormone therapy (chemotherapy: OR=0.15; hormone therapy: OR=0.35), treatment at lower-volume centers (OR=0.83), and treatment in the South and West (South: OR=0.73; West: OR=0.80). Greater distance between patient's residence and radiation facility was also associated with the underuse of PMRT (P=.0001).
Although the use of PMRT for IBC has increased over time, it continues to be underused. Disparities related to a variety of variables impact which IBC patients receive PMRT. A concerted effort must be made to address these disparities in order to optimize the outcomes for IBC.