454 Background: Patient preference is an important factor in selecting appropriate treatment choices. Although underutilized, the standard of care for MIUC is with NAC, whereas evidence for adjuvant therapy is less clear. With the introduction of novel adjuvant treatments such as immune checkpoint inhibitors, treatment options are expected to expand. This study examines whether preferences for adjuvant therapy is impacted in MIUC patients receiving NAC. Methods: A cross-sectional, web-based survey included patients ≥ 18 years old who self-reported being diagnosed with MIUC and underwent radical cystectomy or nephroureterectomy without recurrence. Patients were recruited from the US, UK, Canada, France, and Germany (May–Sep 2021). A DCE using 2 adjuvant treatment profiles included 8 attributes: cancer-free survival, overall survival (OS), hypothyroidism requiring life-long hormone therapy, risk of a serious adverse event (requiring medical intervention/possible hospitalization), nausea, fatigue, diarrhea, and a dosing regimen (frequency of treatment and monitoring); an opt-out option of no treatment was also shown. Patients were grouped according to self-reported receipt of NAC. Descriptive statistics and hierarchical Bayesian logistic model with estimated preference weights were used. Relative importance estimates (mean ± standard error), or how much the attribute ranges accounted for the variation in preferences, were computed for each attribute. Bivariate comparisons used t-tests. Results: This interim analysis identified 205 patients (70.7% of target sample; US, n = 99; Germany, n = 60; UK, n = 31; Canada, n = 14; France, n = 1). Of 82 patients (40.0%) receiving NAC, 32.7% were patients > 65 years and 55.1% were male; receipt of NAC did not differ by age ( P = 0.248) or sex ( P = 0.731). Patients were willing to accept increased risk in toxicities for increased treatment efficacy. Specifically, mean relative importance of treatment attributes showed that difference in median OS (25 months compared to 78 months) was most important (34.6% ± 1.6), although less so for those who did not receive NAC (30.2% ± 2.4 vs 37.5% ± 2.0; P = 0.022). Patients chose an adjuvant treatment option over ‘no treatment’ 91% of the time, with similar findings by NAC status. Conclusions: Preliminary data indicates that receipt of NAC impacts preferences for adjuvant treatment attributes. However, regardless of these attributes, patients still preferred adjuvant treatment over none. These results suggest that providing standard of care NAC does not reduce patient preference for adjuvant therapy; rather, patient preferences for adjuvant treatment attributes vary by treatment history, with implications for improving quality of care and outcomes.
630 Background: The introduction of immunotherapies has changed the first-line treatment landscape for advanced/metastatic renal cell carcinoma (aRCC). This study examines patient preferences in this rapidly changing environment to better understand the tradeoffs patients with aRCC are willing to make when choosing treatment. Methods: Patients with self-reported aRCC in the United States completed an online, cross-sectional survey. A discrete choice experiment was used to assess preferences for attributes of aRCC treatments. Patients completed a series of choice tasks showing 2 treatment profiles that varied in 7 important attributes identified through literature and qualitative research: overall survival, progression-free survival (PFS), objective response rate (ORR), duration of response (DOR), risk of adverse events, quality of life (QOL) changes, and treatment administration. Descriptive statistics were reported, and a hierarchical Bayesian logistic model was used to calculate preference weights. Relative importance estimates (mean ± standard error) were computed for each attribute; these represent the mean percentage of the variation in preferences explained by the attribute. Results: Survey results from a total of 299 patients were analyzed (male, 50%; mean age, 56 years). All 7 attributes were statistically significant for influencing the choice of treatment. Key attributes included treatment regimen convenience and QOL improvement, which ranked similarly to increasing survival time. Among the efficacy attributes, increasing survival time was most important, followed by ORR, PFS, and DOR. Reducing the risk of serious adverse events from 82% to 65% was prioritized after the efficacy parameters. Conclusions: Patients with aRCC highly value less burdensome treatment regimens and improved QoL in addition to improvement in survival. This highlights the need for a broader context beyond efficacy and safety when discussing treatment options with patients. Funding: This study was supported by Bristol Myers Squibb.
Data on the prevalence of alopecia areata (AA) in Japan is limited and the epidemiology of the disease there is not well understood; therefore, it is critical to examine the prevalence and severity of AA in Japan to inform the need for future treatments and research. A cross-sectional, web-based survey was conducted in Japan from January through March 2021. A total of 45006 participants were identified through general population survey panels and asked about their experience with AA and hair loss. The Alopecia Assessment Tool and the Scalp Hair Assessment PRO (TM) were adopted to screen for history of AA and assess disease severity, respectively. Eligible participants submitted photos of their scalp, which were reviewed by three board-certified dermatologists to evaluate the presence and severity of AA. Prevalence and severity estimates were calculated using participants' self-reported data and verified through the dermatologists' assessments. The participant-reported point prevalence of AA was 2.18%. The adjusted point prevalence following physician adjudication using participant-submitted photos was 1.45%. Topical corticosteroids were the most commonly used treatments, with 34.6% of participants diagnosed with AA reported having ever used them. Participants also reported negative impacts on their mood (70.2%), self-esteem (55.8%), and social interactions (48.9%). Despite the social and emotional impact of hair loss, more than one third of those reporting a physician diagnosis of AA were not currently seeking treatment. The current study identified an estimated prevalence of AA in Japan between 1.45% and 2.18% based on the survey results and physician-adjudication of those findings. Considering the impactful psychological burden of AA, the survey results showing that 38.90% of surveyed patients do not currently seek treatment may indicate an unmet need for remedies.
Context. Defining high quality palliative care in seriously ill surgical patients is essential to provide patient-centered surgical care. Quality indicators specifically for seriously ill surgical patients are necessary in order to integrate palliative care into existing surgical quality improvement programs. Objectives. To identify existing quality indicators that measure palliative care delivery in seriously ill surgical patients, characterize their development, and assess their methodological quality. Methods. A PRISMA-guided systematic review included studies that reported on the development process and characteristics of palliative care quality indicators and guidelines in adult surgical patients. Relevant measures were categorized into the previously defined National Consensus Project domains of palliative care and the Donabedian quality framework, and assessed for methodological quality. Results. There were 263 unique measures identified from 26 studies, of which 70% were process measures. Indicators addressing Care of the Patient Near the End of Life (31.5%) and Physical Aspects of Care (20.8%) were the most common. Indicators addressing Spiritual (2.6%) and Cultural Aspects of Care (1.2%) were the least common. Methodological quality varied widely across studies. Although most studies defined a purpose for the indicators and used scientific evidence, many studies lacked input from target populations and few had discussed the practical application of indicators. Conclusion. This review was a key step that informed efforts to develop quality indicators for seriously ill surgical patients. Few indicators addressed non-physical aspects of suffering and no indicators were identified addressing palliative surgery. Future attention is needed toward the development and practical application of palliative care quality indicators in surgical patients. (C) 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Objective: Develop quality indicators that measure access to and the quality of primary PC delivered to seriously ill surgical patients Summary of Background Data: PC for seriously ill surgical patients, including aligning treatments with patients’ goals and managing symptoms, is associated with improved patient-oriented outcomes and decreased healthcare utilization. However, efforts to integrate PC alongside restorative surgical care are limited by a lack of surgical quality indicators to evaluate primary PC delivery. Methods: We developed a set of 27 preliminary indicators that measured palliative processes of care across the surgical episode, including goals of care, decision-making, symptom assessment, and issues related to palliative surgery. Then using the RAND-UCLA Appropriateness method, a 12-member expert advisory panel rated the validity (primary outcome) and feasibility of each indicator twice: (1) remotely and (2) after an in-person moderated discussion Results: After 2 rounds of rating, 24 indicators were rated as valid, covering the preoperative evaluation (9 indicators), immediate preoperative readiness (2 indicators), intraoperative (1 indicator), postoperative (8 indicators), and end of life (4 indicators) phases of surgical care. Conclusions: This set of quality indicators provides a comprehensive set of process measures that possess the potential to measure high quality PC for seriously ill surgical patients throughout the surgical episode
Background The use of Do-Not-Resuscitate (DNR) orders has increased but many are placed late in the dying process. This study is to determine the association between the timing of DNR order placement in the intensive care unit (ICU) and nurses' perceptions of patients' distress and quality of death. Methods 200 ICU patients and the nurses (n = 83) who took care of them during their last week of life were enrolled from the medical ICU and cardiac care unit of New York Presbyterian Hospital/Weill Cornell Medicine in Manhattan and the surgical ICU at the Brigham and Women's Hospital in Boston. Nurses were interviewed about their perceptions of the patients' quality of death using validated measures. Patients were divided into 3 groups-no DNR, early DNR, late DNR placement during the patient's final ICU stay. Logistic regression analyses modeled perceived patient quality of life as a function of timing of DNR order placement. Patient's comorbidities, length of ICU stay, and procedures were also included in the model. Results 59 patients (29.5%) had a DNR placed within 48 hours of ICU admission (early DNR), 110 (55%) placed after 48 hours of ICU admission (late DNR), and 31 (15.5%) had no DNR order placed. Compared to patients without DNR orders, those with an early but not late DNR order placement had significantly fewer non-beneficial procedures and lower odds of being rated by nurses as not being at peace (Adjusted Odds Ratio namely AOR = 0.30; [CI = 0.09-0.94]), and experiencing worst possible death (AOR = 0.31; [CI = 0.1-0.94]) before controlling for procedures; and consistent significance in severe suffering (AOR = 0.34; [CI = 0.12-0.96]), and experiencing a severe loss of dignity (AOR = 0.33; [CI = 0.12-0.94]), controlling for non-beneficial procedures. Conclusions Placement of DNR orders within the first 48 hours of the terminal ICU admission was associated with fewer non-beneficial procedures and less perceived suffering and loss of dignity, lower odds of being not at peace and of having the worst possible death.
Surgeons are critical providers for the growing number of seriously ill patients, many who live with burdensome, life-limiting chronic conditions that impose severe functional limitations or carry a high risk of mortality. Over 500,000 older adults, many with frailty and cognitive impairment, undergo high-risk surgery annually and nearly 20% of Medicare decedents undergo an inpatient surgical procedure in the last month of life.1 Older and seriously ill patients invariably suffer from higher rates of mortality and morbidity after elective and emergency surgery compared to their younger counterparts.2,3 In addition, many older patients experience distressing physical and psychosocial symptoms, and functional impairments, and reduced quality of life (QOL) after surgery. As such, these patients are also at a high risk of dissatisfaction with care and receiving care discordant with their overall health goals. PALLIATIVE CARE IN SERIOUSLY ILL SURGICAL PATIENTS Palliative care (PC) is an interdisciplinary approach to care focused on improving QOL for patients and families at all stages of serious illness and improves the quality of care for seriously ill patients.4 Primary PC delivered by surgical teams is intended to be delivered alongside routine surgical care and includes physical and psychosocial symptom management and establishing treatment goals and preferences. Specialist PC delivered by PC teams includes complex symptom management, conflict resolution regarding goals of treatment, or exploring options for hospice. In this Perspective, the term PC is used broadly to address PC delivery to surgical patients regardless of who is delivering PC. Seriously ill patients have a significant burden of PC needs that can be exacerbated by an acute or elective surgical episode. PC interventions in surgical patients are associated with improvements in outcomes that better reflect the patient experience, such as better QOL, decreased symptom burden, and improved patient-reported quality of communication. These interventions decrease hospital and intensive care unit (ICU) length of stay without increased mortality.5 Despite these benefits, PC in surgery remains poorly defined. A major barrier to integrating PC into surgical care for seriously ill patients has been a lack of standardized quality measures to consistently measure PC delivery. Surgical quality improvement programs, such as the National Surgical Quality Improvement Program (NSQIP), have averted hundreds of thousands of deaths and complications in the last 2 decades by measuring surgical outcomes and benchmarking hospitals based on performance. The success of NSQIP sets a precedent for quality measurement in surgery, which can be leveraged to improve PC delivery to seriously ill surgical patients. Recent efforts to test new geriatric-specific variables through the NSQIP Geriatric Surgery Pilot Project,6 such as preoperative cognitive status and functional status on discharge, highlight a national interest in evaluating care delivery relevant to seriously ill surgical patients. Nonetheless, these new measures are not inclusive enough to encompass the needs of all seriously ill surgical patients nor specifically address PC needs across the entire surgical episode from the preoperative phase to postdischarge. Furthermore, NSQIP does not presently assess outcomes such as symptom improvement or improved QOL that are important in PC.7,8 Therefore, a significant gap remains between the current standards of quality measurement in surgery and quality measures that patients value. PC quality measures exist in other specialties such as critical care medicine, cardiology, and oncology9; however, efforts to integrate PC quality measures into surgery are lacking. We hypothesize that although few quality measures exist to measure PC delivery to surgical patients, existing PC measures in other settings could be adapted or applied to surgery. These findings can provide a framework for surgeons, professional organizations, and policymakers to adapt relevant measures to improve PC delivery to surgical patients. Therefore, we performed an environmental scan of existing quality measures to identify existing quality measures relevant to PC delivery in surgery. PERFORMING AN ENVIRONMENTAL SCAN OF EXISTING QUALITY MEASURES A purposive sample of quality measures was obtained from previous systematic reviews and consultation with experts in PC and surgery. Measures from the National Quality Forum (NQF, https://links.lww.com/SLA/B537) were considered the current standard and then supplemented with 7 other groups of measures from surgery, oncology, patient-provider communication, geriatrics, PC, and critical care: (1) NQF,10 n = 1084 (2) National Surgical Quality Improvement Program (NSQIP),11,12 n = 297 (3) Quality Indicators for Elderly Surgical Patients (QIESP),13 n = 91 (4) Cancer Quality Addressing Symptoms, Side Effects, and Indicators of Supportive Treatment (ASSIST) Project,14 n = 41 (5) Surgical and Cancer Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey composite measures,15 n = 17 (6) Assessing Care of Vulnerable Elders (ACOVE) quality indicators,16 n = 392 (7) Measuring What Matters (MWM),17 n = 10 (8) Care and Communication Bundle (CCB),18 n = 9 Quality measures from these sources were organized into the following categories: (1) PC measures, (2) surgical measures, (3) measures that overlap between PC and surgery (PC measures about surgical patients or surgical measures concerning PC), and (4) PC measures in other specialties that could potentially apply to surgical patients. Measures were defined as PC if they addressed one of the established PC domains19: (1) structure and processes of care, (2) physical and psychosocial symptom management, (3) social, spiritual, and cultural aspects of care, (4) care near end of life (EOL), and (5) ethical and legal aspects of care. Measures were defined as surgical depending on the endorser's classification or if the measure specifically addressed surgery. Measures were identified as overlapping if the endorser classified the measure in both surgery and PC or if the measure addressed PC domains among surgical patients. Two authors (KCL, general surgery resident; SS, trained research coordinator) reviewed and categorized each measure and a third author (ZC, surgeon, board certified in hospice and palliative medicine) reviewed and resolved any disagreement. Among the 1941 measures reviewed, 643 surgical measures and 123 PC measures were identified. Only 18 quality measures overlap between PC and surgery. However, 71 PC measures exist in other fields that can be adapted to measure quality PC in surgery. For example, the NQF-Endorsed Measure #1626, percentage of vulnerable elders admitted to the ICU with documentation of care preferences within 48 hours, could also be applied to seriously ill patients undergoing surgery. EXPLORING SURGICAL PALLIATIVE CARE MEASURES WITHIN THE PHASES OF SURGICAL CARE Recently, the American College of Surgeons conceptualized the surgical episode over 5 phases of surgical care, including preoperative evaluation, immediate preoperative readiness, intraoperative, postoperative, and postdischarge phases.20 We imagined that the measures identified in this environmental scan could be adapted and employed to measure PC delivery within 4 of the 5 phases as well as a separate phase for patients who die proximate to surgery. Examples of overlapping and potentially adaptable quality measures are summarized in Table 1.TABLE 1: Existing Quality Measures Relevant for Palliative Care Delivery to Surgical PatientsIn the preoperative evaluation phase, surgeons engage with patients to deliberate surgery. Overlapping quality measures include patient-reported experience with surgeon communication (CAHPS), percentage of vulnerable elders with documented preoperative discussions regarding clinical and functional risks (ACOVE), and documented discussions of advance directives (ACOVE/QIESP). Existing PC measures potentially adaptable to this phase include the percentage of patients receiving physical symptom assessments (NQF/ACOVE) or have a documented surrogate decision-maker (ACOVE). This scan revealed no overlapping quality measures for the immediate preoperative readiness phase. However, existing measures such as ensuring continuity of advance directives from outpatient to inpatient settings (ACOVE) could be adapted for this phase. In the postoperative period, overlapping measures include patient experience with postoperative communication (CAHPS), following treatment preferences after surgery among older adults (QIESP), and postoperative pain assessment and management (QIESP). Potentially adaptable quality measures include the proportion of patients with documentation of life-sustaining treatment preferences (ACOVE/NQF/MWM/CCB), family meetings in patients with prolonged postoperative ICU stay (CCB), and physical symptom assessments (ACOVE/MWM). After discharge, seriously ill surgical patients continue to have PC needs. Current overlapping measures are limited to self-management ability in the year after orthopedic surgery (NQF) and mortality rates after hip fracture admissions among older adults (NQF). However, potentially adaptable PC measures include symptom assessment and management (NQF/ACOVE) in the postdischarge period. Surgeons also provide EOL care to surgical patients. No surgical measures presently exist for quality EOL care. However, potentially adaptable PC quality measures include those for terminal care, such as management of dyspnea and pain (ACOVE/MWM), ICU stays near EOL for expected deaths (NQF), and bereavement services for survivors (NQF/ACOVE). NEXT STEPS PC delivery is critical to improve value for seriously ill surgical patients. This environmental scan highlights opportunities to translate existing quality measures in related specialties to develop PC measures for surgical patients. Importantly, measures unique to surgery, such as documenting preoperative life-sustaining treatment preferences or preoperative palliative symptom assessment for palliative operations, are not captured among current measures. Even where overlapping measures exist, they do not necessarily address outcomes seriously ill patients value. These findings challenge surgical leaders to use previously described approaches13 to adapt and create PC quality measures relevant to seriously ill surgical patients. These measures should be tested to establish baseline performance and set goals for improvement, then ultimately integrated into quality improvement programs to improve the value of surgical care for complex seriously ill patients.
CONTEXT:Palliative care (PC) for seriously ill surgical patients, including aligning treatments with patients' goals and managing symptoms, is associated with improved patient-oriented outcomes and decreased health care utilization. However, efforts to integrate PC alongside restorative surgical care are limited by the lack of a consensus definition for serious illness in the perioperative context.OBJECTIVES:The objectives of this study were to develop a serious illness definition for surgical patients and identify a denominator for quality measurement efforts.METHODS:We developed a preliminary definition including a set of criteria for 11 conditions and health states. Using the RAND-UCLA Appropriateness Method, a 12-member expert advisory panel rated the criteria for each condition and health state twice, once after an in-person moderated discussion, for validity (primary outcome) and feasibility of measurement.RESULTS:All panelists completed both rounds of rating. All 11 conditions and health states defining serious illness for surgical patients were rated as valid. During the in-person discussion, panelists refined and narrowed criteria for two conditions (vulnerable elder, heart failure). The final definition included the following 11 conditions and health states: vulnerable elder, heart failure, advanced cancer, oxygen-dependent pulmonary disease, cirrhosis, end-stage renal disease, dementia, critical trauma, frailty, nursing home residency, and American Society of Anesthesiology Risk Score IV-V.CONCLUSION:We identified a consensus definition for serious illness in surgery. Opportunities remain in measuring the prevalence, identifying health trajectories, and developing screening criteria to integrate PC with restorative surgical care.
Frailty is a well-established marker of poor outcomes in geriatric trauma patients. There are few interventions to improve outcomes in this growing population. Our goal was to determine if an interdisciplinary care pathway for frail trauma patients improved in-hospital mortality, complications, and 30-day readmissions.This was a retrospective cohort study of frail patients ≥65 years old, admitted to the trauma service at an academic, urban level I trauma center between 2015 and 2017. Patients transferred to other services and those who died within the first 24 hours were excluded. An interdisciplinary protocol for frail trauma patients, including early ambulation, bowel/pain regimens, nonpharmacologic delirium prevention, nutrition/physical therapy consults, and geriatrics assessments, was implemented in 2016. Our main outcomes were delirium, complications, in-hospital mortality, and 30-day readmission, which were compared with these outcomes in patients treated the year before the pathway was implemented. Multivariate logistic regression was used to determine the association of being on the pathway with outcomes.There were 125 and 144 frail patients in the pre- and post-intervention cohorts, respectively. There were no significant demographic differences between the 2 groups. Among both groups, the mean age was 83.51 years (SD 7.11 years), 60.59% were female, and median Injury Severity Score was 10 (interquartile range 9 to 14). In univariate analysis, there were no significant differences in complications (28.0% vs 28.5%, respectively, p = 0.93); however, there was a significant decrease in delirium (21.6% to 12.5%, respectively, p = 0.04) and 30-day readmission (9.6% to 2.7%, respectively, p = 0.01). After adjusting for patient characteristics, patients on the pathway had lower delirium (odds ratio [OR] 0.44, 95% CI 0.22 to 0.88, p = 0.02) and 30-day readmission rates (OR 0.25, 95% CI 0.07 to 0.84, p = 0.02), than pre-pathway patients.An interdisciplinary care protocol for frail geriatric trauma patients significantly decreases their delirium and 30-day readmission risk. Implementing pathways standardizing care for these vulnerable patients could improve their outcomes after trauma.
Study Design: Meta-analysis-based calculation. Objectives: Lumbar degenerative spine disease (DSD) is a common cause of disability, yet a reliable measure of its global burden does not exist. We sought to quantify the incidence of lumbar DSD to determine the overall worldwide burden of symptomatic lumbar DSD across World Health Organization regions and World Bank income groups. Methods: We used a meta-analysis to create a single proportion of cases of DSD in patients with low back pain (LBP). Using this information in conjunction with LBP incidence rates, we calculated the global incidence of individuals who have DSD and LBP (ie, their DSD has neurosurgical relevance) based on the Global Burden of Disease 2015 database. Results: We found that 266 million individuals (3.63%) worldwide have DSD and LBP each year; the highest and lowest estimated incidences were found in Europe (5.7%) and Africa (2.4%), respectively. Based on population sizes, low- and middle-income countries have 4 times as many cases as high-income countries. Thirty-nine million individuals (0.53%) worldwide were found to have spondylolisthesis, 403 million (5.5%) individuals worldwide with symptomatic disc degeneration, and 103 million (1.41%) individuals worldwide with spinal stenosis annually. Conclusions: A total of 266 million individuals (3.63%) worldwide were found to have DSD and LBP annually. Significantly, data quality is higher in high-income countries, making overall quantification in low- and middle-income countries less complete. A global effort to address degenerative conditions of the lumbar spine in regions with high demand is important to reduce disability.
Lee, Katherine C. MD, MSc; Senglaub, Steven S. MS; Walling, Anne M. MD, PhD; Mosenthal, Anne C. MD, FACS; Cooper, Zara MD, MSc, FACS Author Information
BACKGROUND AND PURPOSE:Evaluation of shunted hydrocephalus is the most common indication for ultrafast brain MRI. Radiation-/sedation-free imaging capabilities make this protocol more desirable over CT and standard brain MRI. We hypothesized that ultrafast brain MRI can be used for selected indications beyond shunted hydrocephalus without adverse outcomes.MATERIALS AND METHODS:Ultrafast brain MRI was performed with axial, sagittal, and coronal HASTE. The radiology information system was used to identify pediatric patients (0-18 years of age) who underwent ultrafast brain MRI between March 2014 and May 2016. A retrospective chart review was completed to identify indications other than shunted hydrocephalus, such as ventriculomegaly, macrocephaly, or intracranial cyst. All ultrafast brain MRIs were evaluated by a certified neuroradiologist and a neurosurgeon. Ultrafast brain MRI was deemed of sufficient diagnostic value for these indications if no further standard brain MRI was required for the study indication or if additional imaging was performed for an alternate indication.RESULTS:The radiology information system identified 800 patients who had undergone an ultrafast brain MRI during the study period. One hundred twenty-two of these patients had ventriculomegaly, macrocephaly, or intracranial cyst as the study indication. Twenty-one of the 122 patients were excluded due to insufficient follow-up. Of the remaining 101 patients, only 5 had a standard brain MRI for the same indication, with no additional clinically significant information identified on those studies.CONCLUSIONS:These results suggest that ultrafast brain MRI is sufficient to evaluate ventriculomegaly, macrocephaly, or intracranial cyst. Ultrafast brain MRI is radiation- and sedation-free; therefore, we recommend its use as the primary screening neuroimaging study for these indications.