John G. Cagle

The PEACE project: Identification of quality measures for hospice and palliative care

CONTEXT In 2008, the Centers for Medicare & Medicaid Services (CMS) required U.S. hospices to implement comprehensive quality improvement programs. CMS contracted with the Quality Improvement Organization in North and South Carolina to develop quality measures and instruments to assess hospice and palliative care quality. OBJECTIVES To develop a set of quality measures, with complete specifications, and data collection tools for use by hospice and palliative care providers in quality improvement. METHODS Quality measures were identified from: published literature, the National Quality Forum, CMS measures, the National Quality Measures Clearinghouse, and measures submitted by two national hospice organizations. Available data on the quality measures were gathered and pilot data were collected for measures with no available data. A Technical Expert Panel (TEP) rated quality measures on: importance, scientific soundness, feasibility and usability, using numeric scores for each dimension. Scores for quality measures were averaged across dimensions and across TEP members to identify measures for further development. RESULTS Of 174 measures identified, 88 were determined appropriate to the setting and were reviewed and rated by the TEP. Measures with overall scores ≥75th percentile (n = 23), measures with high importance scores (n = 7), measures for under-represented domains (n = 2), and process measures antecedent to TEP identified measures (n = 2), and were selected. CONCLUSIONS Specifications and data collection tools are available for 34 PEACE quality measures that were highly rated by experts in hospice and palliative care. Future research should assess the scientific soundness and responsiveness of these measures to quality improvement.

Treatment Fidelity in Social Work Intervention Research: A Review of Published Studies

Objectives: This study investigated treatment fidelity in social work research. Method: The authors systematically reviewed all articles published in five prominent social work journals over a 5- year period. Sixty-three outcome studies were identified and reviewed for how well treatment fidelity was monitored using eight review criteria. Results: Seventy-one percent of reviewed studies defined each independent variable but more than two thirds lacked information on control measures for the interventions. Only two studies addressed all eight of the fidelity criteria, while five articles provided sufficient information on seven of the criteria. Nearly half (49%) were identified as primarily effectiveness studies. Slightly fewer (43%) were identified as efficacy studies. Conclusions: Greater attention needs to be paid to fidelity in social work intervention research.

Knowledge About Hospice Exploring Misconceptions, Attitudes, and Preferences for Care

Context: Poor knowledge and misperceptions about hospice are believed to be common, but there is scant evidence about the public’s understanding of hospice. Objectives: To examine hospice knowledge among geographically diverse adults; and describe linkages between knowledge, attitudes and beliefs about hospice care, and demographics. Methods: A small cross-sectional telephone survey of adults living in the contiguous US was conducted using randomly selected numbers (cell phone and landline) and over-sampling of minorities. Measures assessed knowledge (23-item test), attitudes (8-item scale), experiences and preferences related to hospice. Results: 123 participants completed surveys (response rate 46%). 106 (86%) had heard about hospice, 65 (54%) of whom had a personal experience with hospice. Participants had an average hospice knowledge test score of 18 (SD = 3.4) indicating moderate knowledge of hospice. A majority of respondents (62%) did not know that hospice cannot provide concurrent cure-oriented care. Misperceptions about eligibility, coverage of hospice, the provision of hospice in nursing homes or to persons who live alone were not uncommon (missed by >20%). Greater knowledge of hospice was associated with more favorable attitudes about the hospice philosophy of care (r = .22, p = .023) and a greater preference for hospice (p = .049). Respondents who were more educated, worked in the medical field, were non-Hispanic White, and had direct experience with hospice were also more likely to be more knowledgeable about hospice. Conclusion: Despite relatively high hospice awareness and favorability, myths and misperceptions about hospice still abound – and may drive ethnic disparities in end-of-life care. Educational interventions and future study are needed.

Caregiving in a Patient’s Place of Residence: Turnover of Direct Care Workers in Home Care and Hospice Agencies

Objectives: High turnover and staff shortages among home care and hospice workers may compromise the quality and availability of in-home care. This study explores turnover rates of direct care workers for home care and hospice agencies. Methods: OLS (ordinary least square) regression models are run using organizational data from 93 home care agencies and 29 hospice agencies in North Carolina. Results: Home care agencies have higher total turnover rates than hospice agencies, but profit status may be an important covariate. Higher unemployment rates are associated with lower voluntary turnover. Agencies that do not offer health benefits experience higher involuntary turnover. Conclusion: Differences in turnover between hospice and home health agencies suggest that organizational characteristics of hospice care contribute to lower turnover rates. However, the variation in turnover rates is not fully explained by the proposed multivariate models. Future research should explore individual and structural-level variables that affect voluntary and involuntary turnover in these settings.

Informal Caregivers of Cancer Patients: Perceptions About Preparedness and Support During Hospice Care

This study examined the perceptions of preparedness and support of informal caregivers of hospice oncology patients. Respondents included coresiding, proximate, and long-distance caregivers. Thematic analysis was used to analyze the qualitative data from 2 caregiver surveys, one administered prior to the care recipients death and another completed 3 months postdeath. Respondents (N = 69) interpreted preparedness broadly and identified multiple sources of support including hospice personnel, family, friends, neighbors, and spiritual beliefs. Additionally, informational support, such as education, information, and enhanced communication were considered essential for preparing and supporting caregivers. Implications for social work research and practice are provided.

Dementia in relation to family caregiver involvement and burden in long-term care.

To better understand the process and outcomes of family involvement for long-term care residents with varying stages of dementia, we analyzed family and staff data for 467 residents of 24 residential care/assisted living and nursing-home settings. Adjusted analyses found that although the amount of family visitation did not significantly vary by resident cognitive status (15 versus 20 visits/month to persons with and without dementia, respectively), the nature of the visit did. Families of cognitively intact residents spent more time in activities related to social and community engagement, such as taking residents on trips and calling and writing letters (p < .001), while families of more impaired residents spent more time on care-related activities, including tasks related to nutrition (p < .027), mobility (p = .001), and discussing care with staff (p = .007), the latter of which was associated with greater burden (p < .001). Staff identified similar patterns but perceived less family involvement.

Knowledge About Hospice Care and Beliefs About Pain Management: Exploring Differences Between Hispanics and Non-Hispanics

Context: Among Hispanics, incomplete knowledge about hospice care may explain low rates of utilization and culturally-specific beliefs about pain and pain treatments may contribute to disparities in pain management. Objectives: To compare (1) knowledge and attitudes regarding hospice, (2) and beliefs about pain and pain medication between Hispanics and non-Hispanics. Methods: A cross-sectional phone-based survey of adults living in the contiguous United States was conducted using randomly selected phone numbers with over-sampling for diversity. Measures assessed knowledge (a 23-item test), attitudes (an 8-item scale), experiences, preferences related to hospice and beliefs regarding pain and pain management. Results: 123 individuals participated in the survey, 13% of whom were Hispanic. Hispanics were less likely to have heard of hospice are (p <. 001) and, among those who had, more likely to have inaccurate information about it (p = .05). Specifically, Hispanics were more likely to report that only individuals over age 65 are eligible for hospice services, which is incorrect (44% vs. 93% of non-Hispanics; p=.001). Only 67% of Hispanics knew that hospice helps family members as well as the dying person. More Hispanics (43%) than non-Hispanics (9.3%) reported that admitting pain is a sign of weakness (p < .001). A greater proportion of Hispanic respondents agreed that a good patient does not talk about pain (p = .07): 38% vs. 18% from non-Hispanics. Conclusion: Despite the increasing knowledge of hospice care among Hispanics, specific information about the scope of services remains limited. Cultural beliefs about pain management, along with inadequate knowledge of the role of pain management at end of life, persist.

Fidelity Decision Making in Social and Behavioral Research: Alternative Measures of Dose and Other Considerations

This article advances the discussion of treatment fidelity in social and behavioral intervention research by analyzing fidelity in an intervention study conducted within participating long-term care settings of the Collaborative Studies of Long-Term Care. The authors used the Behavior Change Consortiums (BCC) best practices for enhancing treatment fidelity recommendations in the areas of study design, provider training, treatment delivery, treatment receipt, and treatment enactment to evaluate fidelity-related decisions. Modifications to the original fidelity strategies were necessary in all areas. The authors revised their dose score and compared it with two constructed alternative measures of fidelity. Testing alternative measures and selecting the best measure post hoc allowed them to observe chance differences in relationship to outcomes. When the end result is to translate behavioral interventions into real practice settings, it is clear that some degree of flexibility is needed to ensure optimal delivery. Based on the relationship of program elements to the outcomes, a multicomponent intervention dose measure was more appropriate than one related to individual elements alone. By assessing the extent to which their strategies aligned with the BCC recommendations, the authors offer an opportunity for social work researchers to learn from their challenges and decision-making process to maximize fidelity.

Quality Measures for Hospice and Palliative Care: Piloting the PEACE Measures

BACKGROUND The Carolinas Center for Medical Excellence launched the PEACE project in 2006, under contract with the Centers for Medicare & Medicaid Services (CMS), to identify, develop, and pilot test quality measures for hospice and palliative care programs. OBJECTIVES The project collected pilot data to test the usability and feasibility of potential quality measures and data collection processes for hospice and palliative care programs. Settings/subjects: Twenty-two hospices participating in a national Quality Improvement Collaborative (QIC) submitted data from 367 chart reviews for pain care and 45 chart reviews for nausea care. Fourteen additional hospices completed a one-time data submission of 126 chart reviews on 60 potential patient-level quality measures across eight domains of care and an organizational assessment evaluating structure and processes of care. DESIGN Usability was assessed by examining the range, variability and size of the populations targeted by each quality measure. Feasibility was assessed during the second pilot study by surveying data abstractors about the abstraction process and examining the rates of missing data. The impact of data collection processes was assessed by comparing results obtained using different processes. RESULTS Measures shown to be both usable and feasible included: screening for physical symptoms on admission and documentation of treatment preferences. Methods of data collection and measure construction appear to influence observed rates of quality of care. CONCLUSIONS We successfully identified quality measures with potential for use in hospices and palliative care programs. Future research is needed to understand whether these measures are sensitive to quality improvement interventions.

The IOM Report on Dying in America: A Call to Action for Nursing Homes

a Indiana University School of Medicine, Geriatrics, Indianapolis, IN b Indiana University Center for Aging Research, Indianapolis, IN Regenstrief Institute, Indianapolis, IN National PROMISE (Performance Reporting and Outcomes Measurement to Improve the Standard of care at End-of-life) Center, Philadelphia Veterans Affairs Medical Center, Philadelphia, PA University of Pennsylvania School of Nursing, Philadelphia, PA University of Maryland, School of Social Work, Baltimore, MD