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  • 刊频： Monthly, 2009-
  • NLM标题： J Palliat Med
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  • 1.

    【2hr】Does the Poly (ADP-Ribose) Polymerase Inhibitor Veliparib Merit Further Study for Cancer-Associated Weight Loss? Observations and Conclusions from Sixty Prospectively Treated Patients

    包量

    机译 聚（ADP-核糖）聚合酶抑制剂Veliparib是否可进一步研究与癌症相关的体重减轻？六十例接受过治疗的患者的观察和结论
    摘要：Background: More than 80% of patients with advanced cancer develop weight loss. Because preclinical data suggest poly (ADP-ribose) polymerase (PARP) inhibitors can treat this weight loss, this study was undertaken to explore the PARP inhibitor veliparib for this indication.Objective: The current study was undertaken to analyze prospectively gathered data on weight in cancer patients on PARP inhibitors.Design/Setting: The current study relied on a previously published, prospectively conducted phase 1 single institution trial that combined veliparib and topotecan () as antineoplastic therapy for advanced cancer patients. Serial weight data and, when available and clinically relevant, computerized tomography scans were also examined.Measurements: The primary endpoint was 10% or greater weight gain from trial enrollment.Results: Nearly all 60 patients lost weight over time. Only one patient manifested a 10% or greater gain in weight. However, review of computerized tomography L3 images showed this weight gain was a manifestation of ascites. Four other patients gained 5% of their baseline weight. However, findings in two patients with available radiographs showed no evidence of muscle augmentation.Conclusions: The addition of the PARP inhibitor veliparib to chemotherapy does not appear to result in notable weight gain or in weight maintenance in patients with advanced cancer. Interventions other than PARP inhibitors should be considered for the palliation/treatment of cancer-associated weight loss.
  • 2.

    【2hr】Palliative Care and Hospice Interventions in Decompensated Cirrhosis and Hepatocellular Carcinoma: A Rapid Review of Literature

    包量

    机译 代偿性肝硬化和肝细胞癌的姑息治疗和临终关怀干预：文献综述
    摘要：Background: Patients with decompensated cirrhosis (DC) and/or hepatocellular carcinoma (HCC) have a high symptom burden and mortality and may benefit from palliative care (PC) and hospice interventions.Objective: Our aim was to search published literature to determine the impact of PC and hospice interventions for patients with DC/HCC.Methods: We searched electronic databases for adults with DC/HCC who received PC, using a rapid review methodology. Data were extracted for study design, participant and intervention characteristics, and three main groups of outcomes: healthcare resource utilization (HRU), end-of-life care (EOLC), and patient-reported outcomes.Results: Of 2466 results, eight were included in final results. There were six retrospective cohort studies, one prospective cohort, and one quality improvement study. Five of eight studies had a high risk of bias and seven studied patients with HCC. A majority found a reduction in HRU (total cost of hospitalization, number of emergency department visits, hospital, and critical care admissions). Some studies found an impact on EOLC, including location of death (less likely to die in the hospital) and resuscitation (less likely to have resuscitation). One study evaluated survival and found hospice had no impact and another showed improvement of symptom burden.Conclusion: Studies included suggest that PC and hospice interventions in patients with DC/HCC reduce HRU, impact EOLC, and improve symptoms. Given the few number of studies, heterogeneity of interventions and outcomes, and high risk of bias, further high-quality research is needed on PC and hospice interventions with a greater focus on DC.
  • 3.

    【2hr】Potential Technology Development for Palliative Care

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    机译 姑息治疗的潜在技术发展
    摘要：
  • 4.

    【2hr】The Night of 1000 Stevies

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    机译 1000史蒂夫之夜
    摘要：
  • 5.

    【2hr】Treating Tobacco Use in Patients with Incurable Malignancies: Should We Even Start the Conversation?

    包量

    机译 治疗无法治愈的恶性肿瘤患者的烟草使用：我们甚至应该开始谈话吗？
    摘要：Background: Clinical practice guidelines recommend that all medical providers address tobacco use with patients, as the long-term health benefits of becoming tobacco free are well documented. What happens, though, when a patient has an incurable malignancy and, therefore, will not reap the long-term benefits?Clinical Consideration: Our case study encourages providers to consider the relevance of tobacco use treatment for those with incurable diseases.Discussion: Although long-term benefits will not provide realistic motivation, other equally important rewards (e.g., decreased shortness of breath), a sense of accomplishment shared by patients and family, and the ability to exert control over a behavior can be equally motivating for some patients.
  • 6.

    【2hr】The Surprise Question and Identification of Palliative Care Needs among Hospitalized Patients with Advanced Hematologic or Solid Malignancies

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    机译 晚期血液学或实体恶性肿瘤住院患者的惊喜问题和姑息治疗需求的确定
    摘要：Background: Little is known about quality of life (QOL), depression, and end-of-life (EOL) outcomes among hospitalized patients with advanced cancer.Objective: To assess whether the surprise question identifies inpatients with advanced cancer likely to have unmet palliative care needs.Design: Prospective cohort study and long-term follow-up.Setting/Subjects: From 2008 to 2010, we enrolled 150 inpatients at Duke University with stage III/IV solid tumors or lymphoma/acute leukemia and whose physician would not be surprised if they died in less than one year.Measurements: We assessed QOL (FACT-G), mood (brief CES-D), and EOL outcomes.Results: Mean FACT-G score was quite low (66.9; SD 11). Forty-five patients (30%) had a brief CES-D score of ≥4 indicating a high likelihood of depression. In multivariate analyses, better QOL was associated with less depression (OR 0.91, p < 0.0001), controlling for tumor type, education, and spiritual well-being. Physicians correctly estimated death within one year in 101 (69%) cases, yet only 37 patients (25%) used hospice, and 4 (2.7%) received a palliative care consult; 89 (60.5%) had a do-not-resuscitate order, and 63 (43%) died in the hospital.Conclusions: The surprise question identifies inpatients with advanced solid or hematologic cancers having poor QOL and frequent depressive symptoms. Although physicians expected death within a year, EOL quality outcomes were poor. Hospitalized patients with advanced cancer may benefit from palliative care interventions to improve mood, QOL, and EOL care, and the surprise question is a practical method to identify those with unmet needs.
  • 7.

    【2hr】Feasibility of a Video-Based Advance Care Planning Website to Facilitate Group Visits among Diverse Adults from a Safety-Net Health System

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    机译 基于视频的预先护理计划网站可促进通过安全网卫生系统在不同成年人之间进行团体访问
    摘要：Background: Primary care providers in safety-net settings often do not have time to discuss advance care planning (ACP). Group visits (GV) may be an efficient means to provide ACP education.Objectives: To assess the feasibility and impact of a video-based website to facilitate GVs to engage diverse adults in ACP.Design: Feasibility pilot among patients who were ≥55 years of age from two primary care clinics in a Northern California safety-net setting. Participants attended two 90-minute GVs and viewed the five steps of the movie version of the PREPARE website () concerning surrogates, values, and discussing wishes in video format. Two clinician facilitators were available to encourage participation.Measurements: We assessed pre-to-post ACP knowledge, whether participants designated a surrogate or completed an advance directive (AD), and acceptability of GVs and PREPARE materials.Results: We conducted two GVs with 22 participants. Mean age was 64 years (±7), 55% were women, 73% nonwhite, and 55% had limited literacy. Knowledge improved about surrogate designation (46% correct pre vs. 85% post, p = 0.01) and discussing decisions with others (59% vs. 90%, p = 0.01). Surrogate designation increased (48% vs. 85%, p = 0.01) and there was a trend toward AD completion (9% vs. 24%, p = 0.21). Participants rated the GVs and PREPARE materials a mean of 8 (±3.1) on a 10-point acceptability scale.Conclusions: Using the PREPARE movie to facilitate ACP GVs for diverse adults in safety net, primary care settings is feasible and shows potential for increasing ACP engagement.
  • 8.

    【2hr】Perspectives on Palliative Care in Cancer Clinical Trials: Diverse Meanings from Multidisciplinary Cancer Care Providers

    包量

    机译 癌症临床试验中姑息治疗的观点：多学科癌症治疗提供者的不同含义
    摘要：Background: Palliative care (PC) is often misunderstood as exclusively pertaining to end-of-life care, which may be consequential for its delivery. There is little research on how PC is operationalized and delivered to cancer patients enrolled in clinical trials.Objective: We sought to understand the diverse perspectives of multidisciplinary oncology care providers caring for such patients in a teaching hospital.Methods: We conducted qualitative semistructured interviews with 19 key informants, including clinical trial principal investigators, oncology fellows, research nurses, inpatient and outpatient nurses, spiritual care providers, and PC fellows. Questions elicited information about the meaning providers assigned to the term “palliative care,” as well as their experiences with the delivery of PC in the clinical trial context. Using grounded theory, a team-based coding method was employed to identify major themes.Results: Four main themes emerged regarding the meaning of PC: (1) the holistic nature of PC, (2) the importance of symptom care, (3) conflict between PC and curative care, and (4) conflation between PC and end-of-life care. Three key themes emerged with regard to the delivery of PC: (1) dynamics among providers, (2) discussing PC with patients and family, and (3) the timing of PC delivery.Conclusion: There was great variability in personal meanings of PC, conflation with hospice/end-of-life care, and appropriateness of PC delivery and timing, particularly within cancer clinical trials. A standard and acceptable model for integrating PC concurrently with treatment in clinical trials is needed.
  • 9.

    【2hr】Common Items on a Bucket List

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    机译 遗愿清单上的常见项目
    摘要：Background: To provide preference-sensitive care, we propose that clinicians might routinely inquire about their patients' bucket-lists and discuss the impact (if any) of their medical treatments on their life goals.Methods: This cross-sectional, mixed methods online study explores the concept of the bucket list and seeks to identify common bucket list themes. Data were collected in 2015–2016 through an online survey, which was completed by a total of 3056 participants across the United States. Forty participants who had a bucket list were identified randomly and used as the development cohort: their responses were analyzed qualitatively using grounded theory methods to identify the six key bucket list themes. The responses of the remaining 3016 participants were used for the validation study. The codes identified from the development cohort were validated by analyses of responses from 50 randomly drawn subjects from the validation cohort. All the 3016 validation cohort transcripts were coded for presence or absence of each of the six bucket list themes.Results: Around 91.2% participants had a bucket list. Age and spirituality influence the patient's bucket-list. Participants who reported that faith/religion/spirituality was important to them were most likely (95%) to have a bucket list compared with those who reported it to be unimportant (68.2%), χ2 = 37.67. Six primary themes identified were the desire to travel (78.5%), desire to accomplish a personal goal (78.3%), desire to achieve specific life milestones (51%), desire to spend quality time with friends and family (16.7%), desire to achieve financial stability (24.3%), and desire to do a daring activity (15%).Conclusions: The bucket list is a simple framework that can be used to engage patients about their healthcare decision making. Knowing a patient's bucket list can aid clinicians in relating each treatment option to its potential impact (if any) on the patient's life and life goals to promote informed decision making.
  • 10.

    【2hr】Advance Care Planning in an Accountable Care Organization Is Associated with Increased Advanced Directive Documentation and Decreased Costs

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    机译 负责任的护理组织中的提前护理计划与高级指导文件的增加和成本的降低有关
    摘要：Background: Advance care planning (ACP) documents patient wishes and increases awareness of palliative care options.Objective: To study the association of outpatient ACP with advanced directive documentation, utilization, and costs of care.Design: This was a case–control study of cases with ACP who died matched 1:1 with controls. We used 12 months of data pre-ACP/prematch and predeath. We compared rates of documentation with logit model regression and conducted a difference-in-difference analysis using generalized linear models for utilization and costs.Setting/subjects: Medicare beneficiaries attributed to a large rural-suburban-small metro multisite accountable care organization from January 2013 to April 2016, with cross reference to ACP facilitator logs to find cases.Measurements: The presence of advance directive forms was verified by chart review. Cost analysis included all utilization and costs billed to Medicare.Results: We matched 325 cases and 325 controls (51.1% female and 48.9% male, mean age 81). 320/325 (98.5%) ACP versus 243/325 (74.8%) of controls had a Healthcare Power of Attorney (odds ratio [OR] 21.6, 95% CI 8.6–54.1) and 172/325(52.9%) ACP versus 145/325 (44.6%) controls had Practitioner Orders for Life Sustaining Treatment (OR 1.40, 95% CI 1.02–1.90) post-ACP/postmatch. Adjusted results showed ACP cases had fewer inpatient admissions (−0.37 admissions, 95% CI −0.66 to −0.08), and inpatient days (−3.66 days, 95% CI −6.23 to −1.09), with no differences in hospice, hospice days, skilled nursing facility use, home health use, 30-day readmissions, or emergency department visits. Adjusted costs were $9,500 lower in the ACP group (95% CI −$16,207 to −$2,793).Conclusions: ACP increases documentation and was associated with a reduction in overall costs driven primarily by a reduction in inpatient utilization. Our data set was limited by small numbers of minorities and cancer patients.
  • 11.

    【2hr】Taking Psychedelics Seriously

    包量

    机译 认真对待迷幻药
    • 作者：Ira Byock
    • 刊名：Journal of Palliative Medicine
    • 2018年第4期
    摘要：Background: Psychiatric research in the 1950s and 1960s showed potential for psychedelic medications to markedly alleviate depression and suffering associated with terminal illness. More recent published studies have demonstrated the safety and efficacy of psilocybin, MDMA, and ketamine when administered in a medically supervised and monitored approach. A single or brief series of sessions often results in substantial and sustained improvement among people with treatment-resistant depression and anxiety, including those with serious medical conditions.Need and Clinical Considerations: Palliative care clinicians occasionally encounter patients with emotional, existential, or spiritual suffering, which persists despite optimal existing treatments. Such suffering may rob people of a sense that life is worth living. Data from Oregon show that most terminally people who obtain prescriptions to intentionally end their lives are motivated by non-physical suffering. This paper overviews the history of this class of drugs and their therapeutic potential. Clinical cautions, adverse reactions, and important steps related to safe administration of psychedelics are presented, emphasizing careful patient screening, preparation, setting and supervision.Conclusion: Even with an expanding evidence base confirming safety and benefits, political, regulatory, and industry issues impose challenges to the legitimate use of psychedelics. The federal expanded access program and right-to-try laws in multiple states provide precendents for giving terminally ill patients access to medications that have not yet earned FDA approval. Given the prevalence of persistent suffering and growing acceptance of physician-hastened death as a medical response, it is time to revisit the legitimate therapeutic use of psychedelics.
  • 12.

    【2hr】Associations between Mild Cognitive Dysfunction and End-of-Life Outcomes in Patients with Advanced Cancer

    包量

    机译 晚期癌症患者轻度认知功能障碍与生命结局的关系
    摘要：Background: Cognitive function of patients with advanced cancer is frequently compromised.Objective: To determine the extent that patients' cognitive screening scores was associated with their end-of-life (EoL) treatment preferences, advance care planning (ACP), and care.Design: Patients were interviewed at baseline and administered a cognitive screen. Caregivers completed a postmortem assessment.Setting/Subjects: Patients with distant metastases and disease progression after first-line chemotherapy and their caregivers (n = 609) were recruited from outpatient clinics and completed baseline and postmortem assessments.Measurements: In logistic regression models adjusting for patients' age, education level, and performance status, patients' scores on the Pfeiffer Short Portable Mental Status exam at baseline predicted ACP, treatments, and treatment preferences at baseline, and location of death and caregiver perceptions of the patients' death in a postmortem assessment.Results: For each additional error, patients were less likely to consider the intensive care unit a bad place to die (adjusted odds ratio [AOR] = 0.81; confidence interval [95% CI]: 0.66–0.98; p = 0.03) and less likely to have an inpatient hospice stay (AOR = 0.63; 95% CI: 0.40–1.00; p = 0.05). After death (n = 318), caregivers were more likely to perceive that patients died at patients' preferred location (AOR = 1.38; 95% CI: 1.01–1.88; p = 0.04) and less likely to perceive that patients preferred to extend life over relieving discomfort (AOR = 0.63; 95% CI: 0.40–0.99; p = 0.05).Conclusions: Patient cognitive screening scores were associated with EoL outcomes. Rather than avoid patients who are cognitively impaired, oncologists should consider ACP with them.
  • 13.

    【2hr】Provider-Prioritized Domains of Quality in Pediatric Home-Based Hospice and Palliative Care: A Study of the Ohio Pediatric Palliative Care and End-of-Life Network

    包量

    机译 儿科家庭临终关怀和姑息治疗中提供者优先的质量领域：俄亥俄州儿科姑息治疗和生命终止网络的研究
    摘要：Background: Children receiving hospice and palliative care (HPC) differ from adults in important ways. Children are more likely to have rare diagnoses, less likely to have cancer, have longer lengths of stay on hospice, and are more likely to be technology dependent than adults. The National Consensus Project (NCP) in Palliative Care established domains of quality for HPC, but these domains have not been evaluated for applicability in children.Objectives: This study aims to establish consensus stakeholder-prioritized domains of high-quality pediatric home-based hospice and palliative care (HBHPC).Design: Mixed methods design.Setting/Subjects: Providers from the Ohio Pediatric Palliative Care and End-of-life Network.Measurements: Using a modified Delphi technique, providers were surveyed regarding the NCP quality domains for HPC.Results: There was strong consensus on the applicability of each domain to the participants' practices (median scores ranged from 0.97 to 1.0 with interquartile ranges = 0). Consensus on the rank importance of the eight domains was not achieved. Qualitative data included challenges with NCP domain 3 (Psychological and Psychiatric Aspects of Care). It was recommended that titles should remain consistent with adult standards, but domain definitions should be broadened for pediatric HBHPC. Continuity and coordination of care should be added as a ninth domain of quality in pediatric HBHPC.Conclusions: All eight NCP domains were validated in pediatric HBHPC. A ninth domain, Continuity and Coordination of Care, was also added. Ranking the domains was not recommended as consensus indicated weighting them as equally integrated standards. Future studies are needed to evaluate parent- and patient-prioritized domains of quality in pediatric HBHPC and to validate and map pediatric-specific indicators to these domains.
  • 14.

    【2hr】Top 10 Tips Palliative Care Clinicians Should Know About Radiation Oncology

    包量

    机译 姑息治疗临床医生应了解的十大秘诀
    摘要：As palliative care (PC) moves upstream in the course of advanced illness, it is critical that PC providers have a broad understanding of curative and palliative treatments for serious diseases. Possessing a working knowledge of radiation therapy (RT), one of the three pillars of cancer care, is crucial to PC providers given RT's role in both the curative and palliative settings. This article provides PC providers with a primer on the vocabulary of RT; the team of people involved in the planning of RT; and common indications, benefits, and side effects of treatment.
  • 15.

    【2hr】End-of-Life Palliative Care Practices and Referrals in Uganda

    包量

    机译 乌干达临终姑息治疗做法和转诊
    摘要：Background: While early involvement and integration of palliative care with oncology can positively impact quality of life and survival of patients with advanced cancer, there is a dearth of information regarding this integration in sub-Saharan Africa.Objective: We sought to describe the rate and factors predicting specialist palliative referrals among cancer patients in Uganda.Design: We examined the rate of referrals of cancer patients to palliative specialists via a chart review, while also surveying and interviewing doctors at the Uganda Cancer Institute (UCI) about their approaches to palliative care.Setting: All adult patients at the UCI who died in a 20-month interval from 2014 to 2015. All UCI doctors were approached for the survey and 25 (96%) participated. Seven of these doctors were also individually interviewed.Measurements: Number of referrals to palliative specialists and qualitative responses to questions about end-of-life care management.Results: Sixty-six (11.1%) of 595 patients were referred to palliative care specialists. Patients with worse ECOG performance statuses were more likely to be referred to palliative specialists (odds ratio 2.23, p = 0.03); no other factors were predictive of a referral. Median number of days lived after referral was 5 days (interquartile range 2–13). Doctors explained the low referral rate and short life expectancy after referral by limited palliative resources and a reticence to have end-of-life management conversations with patients due to cultural taboos.Conclusion: Despite recognized benefits of palliative collaboration, doctors at the UCI seldom refer patients to palliative care specialists due to limited staffing, cultural barriers, and difficult interservice communication.
  • 16.

    【2hr】Comparison of Methods To Identify Advance Care Planning in Patients with Severe Chronic Obstructive Pulmonary Disease Exacerbation

    包量

    机译 严重慢性阻塞性肺疾病加重患者确定早期护理计划的方法比较
    摘要：Background: Advance care planning (ACP) is recommended for patients with chronic obstructive pulmonary disease (COPD). Yet, ACP documentation is often inaccessible at the time of impending respiratory failure, which may lead to unwanted and costly medical intensive care unit admissions. Electronic medical records (EMRs) contain directive fields and the ability to search for keywords and phrases, but these strategies to rapidly identify ACP have not been validated.Objectives: The aim of this study is to identify the percentage of patients with severe COPD exacerbation who have outpatient ACP documentation and validate two EMR-based methods of rapidly identifying ACP documentation.Design: Retrospective cohort analysis.Setting/Subjects: Patients who required medical intensive care unit admission for exacerbation of COPD at an urban safety-net hospital between 2009 and 2014 were observed.Measurements: We analyzed the sensitivity and specificity of two methods to rapidly identify outpatient ACP documentation: (1) documentation in the EMR directive field and (2) text string search of notes for key phrases, compared with a gold standard clinician review.Results: Our cohort (n = 311) was racially diverse and severely ill with obstructive lung disease. One hundred thirty-two patients (43%) had ACP documentation by gold standard chart review. Compared with a gold standard chart review, a parsimonious text string search was both sensitive (95%) and specific (97%), while the directive box was specific (100%), but not sensitive (54%), for identifying outpatient ACP documentation.Conclusions: EMR directive fields may substantially underestimate ACP when used alone. As full clinician chart reviews are impractical in the emergent setting, text string searches may be a useful strategy to rapidly identify ACP discussions for clinical care and research.
  • 17.

    【2hr】Identifying the Population with Serious Illness: The “Denominator” Challenge

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    机译 识别严重疾病的人群：“分母”挑战
    摘要：Background: To ensure seriously ill people and their families receive high-quality primary and specialty palliative care services, rigorous methods are needed to prospectively identify this population.Objective: To define and operationalize a definition of serious illness for the purpose of identifying patients and caregivers who need primary or specialty palliative care services.Design/Setting: Two stages of work included (1) building expert consensus around a conceptual definition of serious illness and (2) using the National Health and Aging Trends Study linked to Medicare claims data to test a range of operational definitions composed of diagnoses, utilization, and markers of care needs.Measurements: One-year outcomes included mean total Medicare costs, mortality, and percent hospitalized, as well as those reporting ≥2 measures of need and functional impairment. Sensitivity, specificity, and c-statistics (unadjusted and adjusted for age, sex, race, and Medicaid status) were calculated for each definition across the outcomes.Results: Conceptually, “Serious illness” is a health condition that carries a high risk of mortality AND either negatively impacts a person's daily function or quality of life, OR excessively strains their caregivers. The range of operational definitions simulated all had low sensitivity and high specificity across all outcomes. None of the definitions reached an unadjusted c-statistic >0.6 (or adjusted >0.7) for identifying a population with ≥2 indicators of care needs.Conclusions: Standard administrative data are inadequate to identify this population. Defining the seriously ill denominator with high specificity, as described here, will focus efforts toward the highest-need segment of the population, who may indeed benefit most.
  • 18.

    【2hr】Accountability for Community-Based Programs for the Seriously Ill

    包量

    机译 基于社区的重病计划的问责制
    摘要：Innovation is needed to improve care of the seriously ill, and there are important opportunities as we transition from a volume- to value-based payment system. Not all seriously ill are dying; some recover, while others are persistently functionally impaired. While we innovate in service delivery and payment models for the seriously ill, it is important that we concurrently develop accountability that ensures a focus on high-quality care rather than narrowly focusing on cost containment. The Gordon and Betty Moore Foundation convened a meeting of 45 experts to arrive at guiding principles for measurement, create a starter measurement set, specify a proposed definition of the denominator and its refinement, and identify research priorities for future implementation of the accountability system. A series of articles written by experts provided the basis for debate and guidance in formulating a path forward to develop an accountability system for community-based programs for the seriously ill, outlined in this article. As we innovate in existing population-based payment programs such as Medicare Advantage and develop new alternative payment models, it is important and urgent that we develop the foundation for accountability along with actionable measures so that the healthcare system ensures high-quality person- and family-centered care for persons who are seriously ill.
  • 19.

    【2hr】Data Needs for a Serious Illness Care Accountability System: A Framework and Recommendations

    包量

    机译 严重疾病护理责任制的数据需求：框架和建议
    摘要：Background: Successful implementation of a comprehensive accountability system for community-based serious illness care will require a robust data infrastructure. Data will be needed to support care delivery, quality measurement, value-based payment, and evaluation and monitoring.Objective: The specific data needs in these areas need to be identified and understood, so that gaps in currently available data may be addressed.Design: We developed a framework that includes the needed data and data infrastructure to support the features and characteristics of a serious illness care accountability system. Based on this framework, we analyze the current data landscape to identify gaps in available data resources and capacities. This analysis was informed by conducting Internet-based research, interviews with key informants, and a survey of key informants.Results: Based on the identified gaps, we present a series of priority recommendations for advancing the data infrastructure to support community-based serious illness care. These recommendations include additional measurement of patient-reported outcomes, increasing interoperability among various data sources, increasing development and exchange of patient care plans, leveraging newly standardized data on patient functional and cognitive status, and using patient-reported information for clinical decision support at the point of care.Conclusion: There are significant unmet data needs for a comprehensive accountability system in serious illness care, but these gaps can be prioritized and addressed through alignment and collaboration across stakeholders.
  • 20.

    【2hr】Measurement of Chronic Pain and Opioid Use Evaluation in Community-Based Persons with Serious Illnesses

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    机译 社区重症患者慢性疼痛和阿片类药物使用评估的评估
    摘要：Background: Chronic pain associated with serious illnesses is having a major impact on population health in the United States. Accountability for high quality care for community-dwelling patients with serious illnesses requires selection of metrics that capture the burden of chronic pain whose treatment may be enhanced or complicated by opioid use.Objective: Our aim was to evaluate options for assessing pain in seriously ill community dwelling adults, to discuss the use/abuse of opioids in individuals with chronic pain, and to suggest pain and opioid use metrics that can be considered for screening and evaluation of patient responses and quality care.Design: Structured literature review.Measurements: Evaluation of pain and opioid use assessment metrics and measures for their potential usefulness in the community.Results: Several pain and opioid assessment instruments are available for consideration. Yet, no one pain instrument has been identified as “the best” to assess pain in seriously ill community-dwelling patients. Screening tools exist that are specific to the assessment of risk in opioid management. Opioid screening can assess risk based on substance use history, general risk taking, and reward-seeking behavior.Conclusions: Accountability for high quality care for community-dwelling patients requires selection of metrics that will capture the burden of chronic pain and beneficial use or misuse of opioids. Future research is warranted to identify, modify, or develop instruments that contain important metrics, demonstrate a balance between sensitivity and specificity, and address patient preferences and quality outcomes.
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