"They Did Not Know How to Talk to Us and It Seems That They Didn't Care:" Narratives from Bereaved Family Members of Black Veterans.

Racial disparities in the quality of health care services, including end of life (EOL) care, are well-documented. While several explanations for these inequities have been proposed, few studies have examined the underlying mechanisms. This paper presents the results of the qualitative phase of a concurrent mixed-methods study (QUANT + QUAL) that sought to identify explanations for observed racial differences in quality of EOL care ratings using the Department of Veterans Affairs Bereaved Family Survey (BFS). The objective of the qualitative phase of the study was to understand the specific experiences that contributed to an unfavorable overall EOL quality rating on the BFS among family members of Black Veterans. We used inductive thematic analysis to code BFS open-ended items associated with 165 Black Veterans whose family member rated the overall quality of care received by the Veteran in the last month of life as "poor" or "fair." Four major themes emerged from the BFS narratives, including (1) Positive Aspects of Care, (2) Unmet Care Needs, (3) Lack of Empathy, Dignity, and Respect, and (4) Poor Communication. Additionally, some family members offered recommendations for care improvements. Our discussion includes integrated results from both our qualitative and previously reported quantitative findings that may serve as a foundation for future evidence-based interventions to improve the equitable delivery of high-quality EOL care.

Calling all nurses-Now is the time to take action on improving the quality of care in nursing homes.

For a number of decades, nurses have raised concerns about nursing-related issues in nursing homes (NH) such as inadequate registered nurse (RN) staffing, insufficient RN and advanced practice registered nurse (APRN) gerontological expertise, and lack of RN leadership competencies. The NASEM Committee on the Quality of Care in Nursing Homes illuminated the long-standing issues and concerns affecting the quality of care in nursing homes and proposed seven goals and associated recommendations intended to achieve the Committee's vision: Nursing home residents receive care in a safe environment that honors their values and preferences, addresses goals of care, promotes equity, and assesses the benefits and risks of care and treatments. This paper outlines concrete and specific actions nurses and nursing organizations can take to ensure the recommendations are implemented.

Patient-Reported Quality Measures for Palliative Care: The Time is now.

CONTEXT: While progress has been made in the ability to measure the quality of hospice and specialty palliative care, there are notable gaps. A recent analysis conducted by Center for Medicare and Medicaid Services (CMS) revealed a paucity of patient-reported measures, particularly in palliative care domains such as symptom management and communication. OBJECTIVES: The research team, consisting of quality measure and survey developers, psychometricians, and palliative care clinicians, used established state-of-the art methods for developing and testing patient-reported measures. METHODS: We applied a patient-centered, patient-engaged approach throughout the development and testing process. This sequential process included 1) an information gathering phase; 2) a pre-testing phase; 3) a testing phase; and 4) an endorsement phase. RESULTS: To fill quality measure gaps identified during the information gathering phase, we selected two draft measures ("Feeling Heard and Understood" and "Receiving Desired Help for Pain") for testing with patients receiving palliative care in clinic-based settings. In the pre-testing phase, we used an iterative process of cognitive interviews to refine draft items and corresponding response options for the proposed measures. The alpha pilot test supported establishment of protocols for the national beta field test. Measures met conventional criteria for reliability, had strong face and construct validity, and there was diversity in program level scores. The measures received National Quality Forum (NQF) endorsement. CONCLUSION: These measures highlight the key role of patient voices in palliative care and fill a much-needed gap for patient-reported experience measures in our field.

VA nursing home compare metrics as an indicator of skilled nursing facility quality for veterans.

BACKGROUND: The Veterans Administration (VA) provides several post-acute care (PAC) options for Veterans, including VA-owned nursing homes (called Community Living Centers, CLCs). In 2016, the VA released CLC Compare star ratings to support decision-making. However, the relationship between CLC Compare star ratings and Veterans CLC post-acute outcomes is unknown. METHODS: Retrospective observational study using national VA and Medicare data for Veterans discharged to a CLC for PAC. We used a multivariate regression model with hospital random effects to examine the association between CLC Compare overall star ratings and PAC outcomes while controlling for patient, facility, and hospital factors. Our sample included Veteran enrollees age 65+ who were community-dwelling, experienced a hospitalization, and were discharged to a CLC in 2016-2017. PAC outcomes included 30-day unplanned hospital readmission, 30-day mortality, 100-day successful community discharge, and a secondary composite outcome of unplanned readmission or death within 30-days of the hospital discharge. RESULTS: Of the 25,107 CLC admissions, 4088 (16.3%) experienced an unplanned readmission, 4069 (16.2%) died within 30-days of hospital discharge, and 12,093 (48.2%) had a successful 100-day community discharge. Admission to a lower-quality (1-star) facility was associated with lower odds of successful community discharge (OR 0.78; 95% CI 0.66, 0.91) and higher odds of a combined endpoint of 30-day mortality and readmission (OR 1.27; 95% CI 1.09, 1.49), compared to 5-star facilities. However, outcomes were not consistently different between 5-star and 2, 3, or 4-star facilities. Star ratings were not associated with individual readmission or mortality outcomes when considered separately. CONCLUSION: These findings suggest comparisons of 1-star and 5-star CLCs may provide meaningful information for Veterans making decisions about post-acute care. Identifying ways to alter the star ratings so they are differentially associated with outcomes meaningful to Veterans at each level is essential. We found that 1-star facilities had higher rates of 30-day unplanned hospital readmission/death, and lower rates of 100-day successful community discharges compared to 5-star facilities. Yet, like past work on CMS Nursing Home Compare ratings, these relationships were found to be inconsistent or not meaningful across all star levels. CLC Compare may provide useful information for discharge and organizational planning, with some limitations.

Care processes and racial/ethnic differences in family reports of end-of-life care among Veterans: A mediation analysis.

BACKGROUND: Bereaved family members of racial/ethnic minority Veterans are less likely than families of White Veterans to provide favorable overall ratings of end-of-life (EOL) care quality; however, the underlying mechanisms for these differences have not been explored. The objective of this study was to examine whether a set of EOL care process measures mediated the association between Veteran race/ethnicity and bereaved families' overall rating of the quality of EOL care in VA medical centers (VAMCs). METHODS: A retrospective, cross-sectional analysis of linked Bereaved Family Survey (BFS), administrative and clinical data was conducted. The sample included 17,911 Veterans (mean age: 73.7; SD: 11.6) who died on an acute or intensive care unit across 121 VAMCs between October 2010 and September 2015. Mediation analyses were used to assess whether five care processes (potentially burdensome transitions, high-intensity EOL treatment, and the BFS factors of Care and Communication, Emotional and Spiritual Support, and Death Benefits) significantly affected the association between Veteran race/ethnicity and a poor/fair BFS overall rating. RESULTS: Potentially burdensome transitions, high-intensity EOL treatment, and the three BFS factors of Care and Communication, Emotional and Spiritual Support, and Death Benefits did not substantially mediate the relationship between Veteran race/ethnicity and poor/fair overall ratings of quality of EOL care by bereaved family members. CONCLUSIONS: The reasons underlying poorer ratings of quality of EOL care among bereaved family members of racial/ethnic minority Veterans remain largely unexplained. More research on identifying potential mechanisms, including experiences of racism, and the unique EOL care needs of racial and ethnic minority Veterans and their families is warranted.

Honoring Veterans' Preferences: The Association Between Comfort Care Goals and Care Received at the End of Life.

CONTEXT: As part of its Life-Sustaining Treatment (LST) Decisions Initiative, the Veterans Health Administration (VA) in January 2017 began requiring electronic documentation of goals of care and preferences for Veterans with serious illness and at high risk for life-threatening events. OBJECTIVES: To evaluate whether goals of "to be comfortable" were associated with greater palliative care (PC) use and lesser acute care use. METHODS: We identified Veterans with VA inpatient or nursing home stays overlapping July 2018-January 2019, with LST templates documented by January 31, 2019, and who died by April 30, 2019 (N = 18,163). From template documentation, we identified a "to be comfortable" goal. Using VA and Medicare data, we determined PC use (consultations and hospice) and hospital, intensive care unit, and emergency department use 7 and 30 days before death. Multivariate logistic regression examined the associations of interest. RESULTS: Sixty-four percent of the 18,163 Veterans had comfort-care goals; 80% with comfort care goals received hospice and 57% PC consultations (versus 57% and 46%, respectively, for decedents without comfort-care goals). In adjusted analyses, comfort care documented on the LST template prior to death was associated with significantly lower odds of hospital, intensive care unit, and emergency department use near the end of life. In the last 30 days of life, Veterans with a comfort care goal had 44% lower odds (adjusted odds ratio 0.57; 95% CI: 0.51, 0.63) of being hospitalized. CONCLUSION: Findings support the VA's commitment to honoring of Veterans' preferences post introduction of its Life Sustaining Treatment Decisions Initiative.

External Validation of the Skilled Nursing Facility Prognosis Score for Predicting Mortality, Hospital Readmission, and Community Discharge in Veterans.

BACKGROUND/OBJECTIVES: Prognostic tools are needed to identify patients at high risk for adverse outcomes receiving post-acute care in skilled nursing facilities (SNFs) and provide high-value care. The SNF Prognosis Score was developed in a Medicare sample to predict a composite of long-term SNF stay, hospital readmission, or death during the SNF stay. Our goal was to evaluate the score's performance in an external validation cohort. DESIGN: Retrospective observational analysis. SETTING: We used a Veterans Administration (VA) Residential History File that concatenates VA, Medicare, and Medicaid claims to identify care trajectories across settings and payers for individual veterans. PARTICIPANTS: Previously community-dwelling veterans receiving post-acute care in a SNF after hospitalization from January 1, 2012, to December 31, 2014. Both VA and non-VA hospitals and SNFs were included. MEASUREMENTS: We calculated the five-item SNF Prognosis Score for all eligible veterans in our sample and determined its discrimination (using a receiver operating characteristic curve) and calibration (plotting observed and expected events). RESULTS: The 386,483 veterans in our sample had worse physical function, more comorbidities, and were more likely to be treated for heart failure, but they had shorter index hospital lengths of stay and fewer catheters than the original Medicare cohort. The SNF Prognosis Score had similar discrimination (C-statistic = .70; .75 in the derivation cohort) and calibration at low to moderate levels of risk; at high levels, calibration was poorer with the score overestimating risks of adverse events. CONCLUSION: The SNF Prognosis Score has reasonable discrimination and calibration, and it is simple to calculate using an admission SNF assessment and a nomogram. Future work embedding the score into practice is needed to determine real-world feasibility, acceptability, and effectiveness.

Life-Sustaining Treatment Decisions Initiative: Early Implementation Results of a National Veterans Affairs Program to Honor Veterans' Care Preferences.

BACKGROUND: On July 1, 2018, the Veterans Health Administration (VA) National Center for Ethics in Health Care implemented the Life-Sustaining Treatment Decisions Initiative (LSTDI). Its goal is to identify, document, and honor LST decisions of seriously ill veterans. Providers document veterans' goals and decisions using a standardized LST template and order set. OBJECTIVE: Evaluate the first 7 months of LSTDI implementation and identify predictors of LST template completion. DESIGN: Retrospective observational study of clinical and administrative data. We identified all completed LST templates, defined as completion of four required template fields. Templates also include four non-required fields. Results were stratified by risk of hospitalization or death as estimated by the Care Assessment Need (CAN) score. SUBJECTS: All veterans with VA utilization between July 1, 2018, and January 31, 2019. MAIN MEASURES: Completed LST templates, goals and LST preferences, and predictors of documentation. RESULTS: LST templates were documented for 108,145 veterans, and 85% had one or more of the non-required fields completed in addition to the required fields. Approximately half documented a preference for cardiopulmonary resuscitation. Among those who documented specific goals, half wanted to improve or maintain function, independence, and quality of life while 28% had a goal of life prolongation irrespective of risk of hospitalization/death and 45% expressed a goal of comfort. Only 7% expressed a goal of being cured. Predictors of documentation included VA nursing home residence, older age, frailty, and comorbidity, while non-Caucasian race, rural residence, and receipt of care in a lower complexity medical center were predictive of no documentation. CONCLUSIONS: LST decisions were documented for veterans at high risk of hospitalization or death. While few expressed a preference for cure, half desire, cardiopulmonary resuscitation. Predictors of documentation were generally consistent with existing literature. Opportunities to reduce observed disparities exist by leveraging available VA resources and programs.

Association of Expanded VA Hospice Care With Aggressive Care and Cost for Veterans With Advanced Lung Cancer.

IMPORTANCE: Medicare hospice beneficiaries discontinue disease-modifying treatments because the hospice benefit limits access. While veterans have concurrent access to hospice care and Veterans Affairs (VA) Medical Center (VAMC)-provided treatments, the association of this with changes in treatment and costs of veterans' end-of-life care is unknown. OBJECTIVE: To determine whether increasing availability of hospice care, without restrictions on disease-modifying treatments, is associated with reduced aggressive treatments and medical care costs at the end of life. DESIGN, SETTING, AND PARTICIPANTS: A modified difference-in-differences study design, using facility fixed effects, compared patient outcomes during years with relatively high vs lower hospice use. This study evaluated 13 085 veterans newly diagnosed with stage IV non-small cell lung cancer (NSCLC) from 113 VAMCs with a minimum of 5 veterans diagnosed with stage IV NSCLC per year, between 2006 and 2012. Data analyses were conducted between January 2017 and July 2018. EXPOSURES: Using VA inpatient, outpatient, pharmacy claims, and similar Medicare data, we created VAMC-level annual aggregates of all patients who died of cancer for hospice use, cancer treatment, and/or concurrent receipt of both in the last month of life, dividing all VAMC years into quintiles of exposure to hospice availability. MAIN OUTCOMES AND MEASURES: Receipt of aggressive treatments (2 or more hospital admissions within 30 days, tube feeding, mechanical ventilation, intensive care unit [ICU] admission) and total costs in the first 6 months after diagnosis. RESULTS: Of the 13 085 veterans included in the study, 12 858 (98%) were men; 10 531 (81%) were white, and 5949 (46%) were older than 65 years. Veterans with NSCLC treated in a VAMC in the top hospice quintile (79% hospice users), relative to the bottom quintile (55% hospice users), were more than twice as likely to have concurrent cancer treatment after initiating hospice care (adjusted odds ratio [AOR], 2.28; 95% CI, 1.67-3.31). Nonetheless, for veterans with NSCLC seen in VAMCs in the top hospice quintile, the AOR of receiving aggressive treatment in the 6 months after diagnosis was 0.66 (95% CI, 0.53-0.81), and the AOR of ICU use was 0.78 (95% CI, 0.62-0.99) relative to patients seen in VAMCs in the bottom hospice quintile. The 6-month costs were lower by an estimated $266 (95% CI, -$358 to -$164) per day for the high-quintile group vs the low-quintile group. There was no survival difference. CONCLUSIONS AND RELEVANCE: Increasing the availability of hospice care without restricting treatment access for veterans with advanced lung cancer was associated with less aggressive medical treatment and significantly lower costs while still providing cancer treatment.

Does Quality of End-of-Life Care Differ by Urban-Rural Location? A Comparison of Processes and Family Evaluations of Care in the VA.

PURPOSE: Several studies have identified differences in end-of-life (EOL) care between urban and rural areas, yet little is known about potential differences in care processes or family evaluations of care. The purpose of this study was to examine the relationship between rurality of residence and quality of EOL care within the Veterans Affairs health care system. METHODS: This study was a retrospective, cross-sectional analysis of 126,475 veterans who died from October 2009 through September 2016 in inpatient settings across 151 facilities. Using unadjusted and adjusted logistic regression, we compared quality of EOL care between urban and rural veterans using family evaluations of care and 4 quality of care indicators for receipt of (1) palliative care consult, (2) a chaplain visit, (3) death in an inpatient hospice unit, and (4) bereavement support. FINDINGS: Veterans from rural areas had lower odds of dying in an inpatient hospice unit compared to veterans from urban areas, before and after adjustment (large rural OR 0.73, 95% CI: 0.70-0.77; P < .001, small rural OR 0.81, 95% CI: 0.77-0.86; P < .001, isolated rural OR 0.87, 95% CI: 0.81-0.93; P < .001). Differences in comparisons of other quality of care indicators were small and of mixed significance. No significant differences were found in family ratings of care in fully adjusted models. CONCLUSION: Receipt of some EOL quality indicators differed with urban-rural residence for some comparisons. However, family ratings of care did not. Our findings call for further investigation into unmeasured individual characteristics and facility processes related to rurality.

Race/Ethnicity and End-of-Life Care Among Veterans.

BACKGROUND: Few studies have examined comprehensively racial/ethnic variations in quality of end-of-life care. OBJECTIVE: Examine end-of-life care quality received by Veterans and their families, comparing racial/ethnic minorities to nonminorities. RESEARCH DESIGN: This is a retrospective, cross-sectional analysis of chart review and survey data. SUBJECTS: Nearly all deaths in 145 Veterans Affairs Medical Centers nationally (n=94,697) in addition to Bereaved Family Survey (BFS) data (n=51,859) from October 2009 to September 2014. MEASURES: Outcomes included 15 BFS items and 4 indicators of high-quality end-of-life care, including receipt of a palliative care consult, chaplain visit, bereavement contact, and death in hospice/palliative care unit. Veteran race/ethnicity was measured via chart review and defined as non-Hispanic white, non-Hispanic black, Hispanic, or other. RESULTS: In adjusted models, no differences were observed by race/ethnicity in receipt of a palliative care consult or death in a hospice unit. Although black Veterans were less likely than white Veterans to receive a chaplain visit, Hispanic Veterans were more likely than white Veterans to receive a chaplain visit and to receive a bereavement contact. Less favorable outcomes for racial/ethnic minorities were noted on several BFS items. In comparison with family members of white Veterans, families of minority Veterans were less likely to report excellent overall care, and this difference was largest for black Veterans (48% vs. 62%). CONCLUSIONS: Bereaved family members of minority Veterans generally rate the quality of end-of-life care less favorably than those of white Veterans. Family perceptions are critical to the evaluation of equity and quality of end-of-life care.

Rationale and Design of the Randomized Evaluation of Default Access to Palliative Services (REDAPS) Trial.

The substantial nationwide investment in inpatient palliative care services stems from their great promise to improve patient-centered outcomes and reduce costs. However, robust experimental evidence of these benefits is lacking. The Randomized Evaluation of Default Access to Palliative Services (REDAPS) study is a pragmatic, stepped-wedge, cluster randomized trial designed to test the efficacy and costs of specialized palliative care consultative services for hospitalized patients with advanced chronic obstructive pulmonary disease, dementia, or end-stage renal disease, as well as the overall effectiveness of ordering such services by default. Additional aims are to identify the types of services that are most beneficial and the types of patients most likely to benefit, including comparisons between ward and intensive care unit patients. We hypothesize that patient-centered outcomes can be improved without increasing costs by simply changing the default option for palliative care consultation from opt-in to opt-out for patients with life-limiting illnesses. Patients aged 65 years or older are enrolled at 11 hospitals using an integrated electronic health record. As a pragmatic trial designed to enroll between 12,000 and 15,000 patients, eligibility is determined using a validated, electronic health record-based algorithm, and all outcomes are captured via the electronic health record and billing systems data. The time at which each hospital transitions from control, opt-in palliative care consultation to intervention, opt-out consultation is randomly assigned. The primary outcome is a composite measure of in-hospital mortality and length of stay. Secondary outcomes include palliative care process measures and clinical and economic outcomes. Clinical trial registered with www.clinicaltrials.gov (NCT02505035).

Not quite seamless: transitions between home and inpatient hospice.

BACKGROUND: Although most hospice care occurs in the home, a growing number of patients utilize inpatient hospice settings. An inpatient hospice stay requires one or more transitions in care settings, although little is known about these transitions. OBJECTIVE/DESIGN: Using ethnographic methods, this study examined the beliefs and practices of older adults, their caregivers, and hospice interdisciplinary team (IDT) members surrounding transitions between home and inpatient hospice. SETTING/SUBJECTS: Data collection took place over 11 months in a large not-for-profit hospice agency in the northeast. Data were collected through 18 observations and 38 semistructured interviews with patients, family caregivers, and hospice IDT members. RESULTS: Transitions from home to inpatient hospice centered on three processes: developing a plan for future needs, identifying triggers that signaled increased needs for care, and navigating through phases of increased care. Patients, family caregivers, or IDT members identified triggers for more care, and actions were taken to respond in the home care setting. Challenges to these actions occurred in many phases of care and when needs were ultimately unable to be addressed at home, patients were transferred to inpatient hospice. CONCLUSIONS: Understanding how care planning, increased needs, and phases of care influence decisions about transitioning patients to inpatient hospice can guide IDT members in minimizing transitions and providing a more seamless continuum of hospice care.

Geriatric palliative care in long-term care settings with a focus on nursing homes.

Almost 1.7 million older Americans live in nursing homes, representing a large proportion of the frailest, most vulnerable elders needing long-term care. In the future, increasing numbers of older adults are expected to spend time and to die in nursing homes. Thus, understanding and addressing the palliative care needs of this population are critical. The goals of this paper are to describe briefly the current state of knowledge about palliative care needs, processes, and outcomes for nursing home residents; identify gaps in this knowledge; and propose priorities for future research in this area.

A nationwide study comparing end-of-life care for men and women veterans.

BACKGROUND: The quality of end-of-life (EOL) care at Veterans Affairs Medical Centers (VAMC) has improved. To date, however, the quality and outcomes of end-of-life care delivered to women veterans have not been examined. OBJECTIVE: The goal of this study was to evaluate gender differences in the quality of EOL care received by patients in VAMCs nationwide. DESIGN: The study was conducted via retrospective medical chart review and telephone survey with next of kin of recently deceased inpatients. SETTING/SUBJECTS: The chart review included records for all patients who died in acute and long-term care units in 145 VAMCs nationwide (n=36,618). For the survey, the documented next of kin were invited to respond on behalf of the deceased veteran; a total of 25,638 next of kin completed the survey. MEASUREMENTS: Chart review measures included five indicators of optimal end-of-life care. Bereaved family survey items included one global and nine specific items (e.g., bereavement care, pain management) describing care in the last month of life. RESULTS: Receipt of optimal end-of-life care did not differ significantly between women and men with respect to frequency of discussion of treatment goals with a family member, receipt of palliative consult, bereavement contact, and chaplain contact with a family member. Family members of women were more likely than those of men to report that the overall care provided to the veteran had been "excellent" (adjusted proportions: 63% versus 56%; odds ratio (OR)=1.33; 95% confidence interval (CI) 1.10-1.61; p=0.003). CONCLUSIONS: In this nationwide study of all inpatient deaths in VAMCs, women received comparable and on some metrics better quality EOL care than that received by male patients.

Challenges in making a business case for effective pain management in nursing homes.

The lack of a systematic and comprehensive pain management program is a common quality problem in nursing homes. The purpose of this article is to address the business case for effective pain management in this setting, including the conceptual domains and processes that should be considered in improving quality and reducing costs. Unfortunately, the literature contains very little to inform those working to implement effective and efficient pain management programs in nursing homes. This article suggests several strategies for establishing an internal business case to support the implementation of a comprehensive pain management program in a nursing home setting.

Advanced dementia: state of the art and priorities for the next decade.

Dementia is a leading cause of death in the United States. This article outlines the current understanding of advanced dementia and identifies research priorities for the next decade. Research over the past 25 years has largely focused on describing the experience of patients with advanced dementia. This work has delineated abundant opportunities for improvement, including greater recognition of advanced dementia as a terminal illness, better treatment of distressing symptoms, increased access to hospice and palliative care services, and less use of costly and aggressive treatments that may be of limited clinical benefit. Addressing those opportunities must be the overarching objective for the field in the coming decade. Priority areas include designing and testing interventions that promote high-quality, goal-directed care; health policy research to identify strategies that incentivize cost-effective and evidence-based care; implementation studies of promising interventions and policies; and further development of disease-specific outcome measures. There is great need and opportunity to improve outcomes, contain expenditures, reduce disparities, and better coordinate care for the millions of persons in the United States who have advanced dementia.

Use of pain-behavioral assessment tools in the nursing home: expert consensus recommendations for practice.

Many tools are available for the assessment of pain in nonverbal older adults; however, guidelines are needed to help clinicians select the proper instrument for use in the nursing home setting. This article describes a project to identify clinically useful pain-behavioral assessment tools that have undergone sufficient psychometric testing. Phase 1 of the project included a comprehensive review and critique of currently available tools. In Phase 2 the National Nursing Home Pain Collaborative developed criteria to evaluate an updated list of tools and then rated 14 tools using these criteria. As a result, two tools were recommended as most representative of current state of the science, most clinically relevant, and practically applicable to integrate into everyday practice and support adherence to regulatory guidelines. Such recommendations for selection of best-available pain assessment tools are a cornerstone for clinicians in regard to managing pain of nursing home residents who, due to dementia, are unable to self-report pain.

Comparing the psychometric properties of the Checklist of Nonverbal Pain Behaviors (CNPI) and the Pain Assessment in Advanced Dementia (PAIN-AD) instruments.

OBJECTIVE: To examine and compare the psychometric properties of two common observational pain assessment tools used in persons with dementia. DESIGN: In a cross-sectional descriptive study nursing home (NH) residents were videotaped at rest and during a structured movement procedure. Following one training session and one practice session, two trained graduate nursing research assistants independently scored the tapes using the two pain observation tools. SETTING: Fourteen NHs in Western Washington State participating in a randomized controlled trial of an intervention to enhance pain assessment and management. PARTICIPANTS: Sixty participants with moderate to severe pain were identified by nursing staff or chosen based on the pain items from the most recent Minimum Data Set assessment. MEASURES: Checklist of Nonverbal Pain Indicators (CNPI) and the Pain Assessment in Advanced Dementia (PAINAD), demographic and pain-related data (Minimum Data Set), nursing assistant reports of participants' usual pain intensity, and Pittsburgh Agitation Scale. RESULTS: Internal consistency for both tools was good except for the CNPI at rest for one rater. Inter-rater reliability for pain presence was fair (K = 0.25 for CNPI with movement; K = 0.31 for PAINAD at rest) to moderate (K = 0.43 for CNPI at rest; K = 0.54 for PAINAD with movement). There were significant differences in mean CNPI and PAINAD scores at rest and during movement, providing support for construct validity. However, both tools demonstrated marked floor effects, particularly when participants were at rest. CONCLUSIONS: Despite earlier studies supporting the reliability and validity of the CNPI and the PAINAD, findings from the current study indicate that these measures warrant further study with clinical users, should be used cautiously both in research and clinical settings and only as part of a comprehensive approach to pain assessment.