Barriers to accessing palliative care for pediatric patients with cancer: A review of the literature.

Although many of the 16,000 children in the United States diagnosed who are with cancer each year could benefit from pediatric palliative care, these services remain underused. Evidence regarding the barriers impeding access to comprehensive palliative care is dispersed in the literature, and evidence specific to pediatric oncology remains particularly sparse. The purpose of the current review was to synthesize the existing literature regarding these barriers and the strategies offered to address them. The authors completed a literature search using the PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and Web of Science databases. In total, 71 articles were reviewed. Barriers to accessing pediatric palliative care were categorized according to the 4 levels of a modified socioecological model (ie, barriers related to policy/payment, health systems, organizations, and individuals). Major themes identified at each level included: 1) the lack of consistent and adequate funding mechanisms at the policy/payment level, 2) the lack of pediatric palliative care programs and workforce at the health systems level, 3) difficulties integrating palliative care into existing pediatric oncology care models at the organizational level, and 4) the lack of knowledge about pediatric palliative care, discomfort with talking about death, and cultural differences between providers and patients and their families at the individual level. Recommendations to address each of the barriers identified in the literature are included. Cancer 2018;124:2278-88. © 2018 American Cancer Society.

A case study of a theory-based method for identifying and reporting core functions and forms of evidence-based interventions.

Adaptation of existing evidence-based interventions (EBIs) to improve their fit in new contexts is common. A critical first step in adaptation is to identify core functions (purposes) and forms (activities) of EBIs. Core functions should not be adapted as they are what account for the efficacy of EBIs. Despite their importance, core functions are rarely identified by EBI developers; methods for identifying them post hoc are lacking. We present a case study of theory-based methods for identifying core functions and forms post hoc. We developed these methods as the first step in a larger effort to adapt an existing EBI to improve the timeliness of referrals to hospice to a new patient population and care setting. Our methods were rooted in the Planned Adaptation Model (PAM). Through our case study, we developed six steps for identifying core functions and forms, as well as accompanying tools and methods. Our case study further operationalized PAM in several ways. Where PAM offered guiding tenets for identifying core functions and forms (review existing EBI materials, conduct primary data collection, and identify the theory of change), we produced specific tools (interview guides and codebooks) and methods (sampling approaches and analytic methods). Our case study extended PAM with the addition of two steps in the process of identifying core functions and forms: (a) identifying the usual care pathway, including barriers to the outcome of interest encountered in usual care, and (b) mapping EBI core functions onto an extant theory. Identifying core functions and forms is a critical first step in the adaptation process to ensure adaptations do not inadvertently compromise the efficacy or effectiveness of the EBI by compromising core functions. Our case study presents step-by-step methods that could be used by researchers or practitioners to identify core functions and forms post hoc.

Pilot Test of an Adapted Intervention to Improve Timeliness of Referrals to Hospice and Palliative Care for Eligible Home Health Patients.

Background: Casarett et al. tested an intervention to improve timeliness of referrals to hospice. Although efficacious in the nursing home setting, it was not tested in other settings of care for seriously ill patients. We, therefore, adapted Casarett's intervention for use in home health (HH). Objective: To assess feasibility, acceptability, and patient outcomes of the adapted intervention. Design: We conducted a nine-week observational pilot test. Setting/Subjects: We conducted our pilot study with two HH agencies. Eligible patients included those who were high risk or frail (identified by the agencies' analytic software as being moderate to high risk for hospitalization or a candidate for hospice referral). Clinical managers identified eligible patients and registered nurses then delivered the intervention, screening patients for hospice appropriateness by asking about care goals, needs, and preferences and initiating appropriate follow-up for patients who screened positive. Measurements: We collected quantitative data on patient enrollment rates and outcomes (election of hospice and/or palliative care). We collected qualitative data on pilot staff experience with the intervention and suggestions for improvement. Results: Pilot HH agencies were able to implement the intervention with high fidelity with minimal restructuring of workflows; 14% of patients who screened positive for hospice appropriateness elected hospice or palliative care. Conclusions: Our findings suggest the adapted intervention was feasible and acceptable to enhance timeliness of hospice and palliative care referral in the HH setting. Additional adaptations suggested by pilot participants could improve impact of the intervention.

Have Hospice Costs Increased After Implementation of the Hospice Quality-Reporting Program?

CONTEXT: The Centers for Medicare & Medicaid Services Hospice Quality-Reporting Program introduced the requirement that hospices nationwide begin collecting and submitting standardized patient-level quality data on July 1, 2014. OBJECTIVES: This study examined whether this requirement has increased hospice total costs, general costs, and visiting services costs. METHODS: We conducted a cross-sectional study using data from the 2012 and 2014 Medicare hospice cost reports linked to hospice claims. We measured total costs per patient day (PPD), general costs PPD, and visiting services costs PPD for freestanding hospices. We estimated the incremental costs of operating in 2014 vs. 2012 using hierarchical random effects models and adjusting for year, wage index, care volume, case-mix, and hospice and market characteristics, stratified by hospice ownership type. RESULTS: Both for-profit and nonprofit hospices reported higher total costs PPD and general services costs PPD in 2014 than 2012. Nonprofit hospices also reported higher general costs PPD in 2014 than 2012. In adjusted models, the total costs PPD in 2014 were $10.55 higher than in 2012 for nonprofit hospices and $6.43 higher for for-profit hospices. The increase in general costs PPD and visiting services costs PPD ranged from $3.15 to $5.87 by ownership and type of costs. Both for-profit and nonprofit hospices showed lower costs PPD for all types associated with more patients and longer length of stay. CONCLUSION: Hospice costs increased after the Centers for Medicare & Medicaid Services Hospice Quality-Reporting Program quality data collection/submission requirement. Complementary studies need to understand whether increased costs brought additional benefits.

Hospices' use of electronic medical records for quality assessment and performance improvement programs.

CONTEXT: Electronic medical records (EMRs) are increasingly viewed as essential tools for quality assurance and improvement in many care settings, but little is known about the use of EMRs by hospices in their quality assessment and performance improvement (QAPI) programs. OBJECTIVES: To examine the data sources hospices use to create quality indicators (QIs) used in their QAPI programs and to examine the domains of EMR-based QIs. METHODS: We used self-reported QIs (description, numerator, and denominator) from 911 hospices nationwide that participated in the Centers for Medicare & Medicaid Services nationwide hospice voluntary reporting period. The data reflected QIs that hospices used for their internal QAPI programs between October 1 and December 31, 2011. We used the primary data sources for QIs reported by hospices and analyzed EMR-based QIs in terms of the quality domains and themes addressed. RESULTS: EMRs were the most frequent data source for the QIs reported, followed by family survey and paper medical record. Physical symptom management was the largest quality domain--included in 51.5% of the reported EMR-based QIs--followed by patient safety and structure and process of care. CONCLUSION: Most participating hospices use EMRs for retrieving items needed for QI calculations. EMR-based QIs address various quality domains and themes. Our findings present opportunities for potential future reporting of EMR-based quality data.

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.

Use of electronic documentation for quality improvement in hospice.

Little evidence exists about the use of electronic documentation (ED) in hospice and its relationship to quality improvement (QI) practices. The purposes of this study were to (1) estimate the prevalence of ED use in hospice, (2) identify organizational characteristics associated with use of ED, and (3) determine whether quality measurement practices differed based on documentation format (electronic vs nonelectronic). Surveys concerning the use of ED for QI practices and the monitoring of quality-related care and outcomes were collected from 653 hospices. Users of ED were able to monitor a wider range of quality-related data than users of non-ED. Quality components such as advanced care planning, cultural needs, experience during care of the actively dying, and the number/types of care being delivered were more likely to be documented by users of ED. Use of ED may help hospices monitor quality and compliance.

Quality improvement in hospice: adding a big job to an already big job?

Hospice organizations are adopting quality measurement and quality improvement (QI) practices to comply with the Medicare Conditions of Participation effective January 31, 2009. However, little is known about organizational best practices or specific needs during implementation. This study identified and described the barriers and facilitators to QI implementation in hospice. Using semistructured interviews with a national sample of key informants (n = 52) concerning facilitators and barriers to QI in hospice, 4 major themes emerged from the data regarding participants' experiences and perceptions: (1) external factors constrain QI implementation; (2) internal factors limit capacity for QI; (3) research on best practices is limited; and (4) traditional QI may not be a good fit for hospice. Though challenging, participants provided recommendations that they believed would facilitate QI in hospice. Categorizing barriers and facilitators as within or outside an organization's control may help organizations assess their capabilities and locate resources to address areas for improvement.

Hospices' preparation and practices for quality measurement.

CONTEXT: Hospice and palliative care organizations need to measure and analyze quality of care, in response to national palliative care practice guidelines and new hospice regulatory requirements. Little is known about hospices' readiness to meet this new mandate. OBJECTIVES: We analyzed data from a national survey of hospices to describe preparation and practices for quality measurement and research and to examine associated organizational characteristics. METHODS: Web-based survey of hospice staff responsible for quality of care. RESULTS: Survey respondents represented 652 National Hospice and Palliative Care Organization (NHPCO) member hospice organizations; 52% were participating in the NHPCO Quality Partners program. Most of these hospices involve clinical providers in decisions to change care practices (69%) and participate in quality improvement projects (64%), but research participation is uncommon (16%). Many hospices collect data about staff certification and training (76%) and use family surveys to measure care quality (70%). A minority of hospices have clinical data in electronic format (13%-29%). Large size, multiple sites, government ownership, and presence of a change leader in the organization were the characteristics associated with greater preparation for quality improvement and research. CONCLUSION: Current organizational activities, data collection rates, and use of electronic data systems may limit hospices' preparation and practices related to quality improvement and research participation; larger size and designation of a change leader are associated with greater capacity. Hospices may need technical assistance and training to provide for meaningful measurement of quality of care.

The PEACE project review of clinical instruments for hospice and palliative care.

BACKGROUND: Hospice and palliative care organizations are expanding their use of standardized instruments and other approaches to measure quality. We undertook a systematic review and evaluation of published patient-level instruments for potential application in hospice and palliative care clinical quality measurement. METHODS: We searched prior reviews and computerized reference databases from 1990 through February 2007 for studies of instruments relevant to physical, psychological, social, cultural, spiritual, or ethical aspects of palliative care, or measuring prognosis, function or continuity of care. Publications were selected for full review if they provided evidence of psychometric properties or practical application of an instrument tested in or appropriate for a hospice or palliative care population. Selected instruments were evaluated and scored for scientific soundness and potential application in clinical quality measurement. RESULTS: The search found 1427 publications, with 229 selected for full manuscript review. Manuscripts provided information on 129 instruments which were evaluated using a structured scoring guide for psychometric properties. Thirty-nine instruments scoring near or above the 75th percentile were recommended. Most instruments covered multiple domains or focused on care for physical symptoms, psychological or social aspects of care. Few instruments were available to measure cultural aspects of care, structure and process of care, and continuity of care. CONCLUSION: Numerous patient-level instruments are available to measure physical, psychological and social aspects of palliative care with adequate evidence for scientific soundness and practical clinical use for quality improvement and research. Other aspects of palliative care may benefit from further instrument development research.

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.

The potential use of autopsy for continuous quality improvement in hospice and palliative care.

CONTEXT: In 2006, the Centers for Medicare & Medicaid Services (CMS) contracted with The Carolinas Center for Medical Excellence (CCME), the Quality Improvement Organization (QIO) for North and South Carolina, to develop an instrument package and procedures for hospice and palliative care programs to assess and monitor the quality of the care that they provide. As part of our work, we investigated the potential uses of autopsy for continuous quality improvement purposes. OBJECTIVE: Our objective is to understand (1) the potential benefits and uses of autopsy for various constituents, (2) the reasons for the decline in the use of autopsy despite these potential benefits, (3) the practical aspects of autopsy in the hospice setting, and (4) current hospice practices in regard to autopsy. DESIGN: To achieve these goals, we reviewed the existing literature and interviewed stakeholders, including hospice and palliative care providers, professional organizations and advocacy groups, quality improvement and measurement experts, and pathologists. RESULTS: Important barriers limit the use of autopsy to understand and improve quality of care in hospice, including costs, unintended consequences, and the limited ability to systematically use autopsy information to improve care. Some themes were more predominant among providers, whereas others emerged primarily from interviews with nonproviders. CONCLUSIONS: On the basis of existing research and stakeholder interviews, autopsy is currently not a feasible mechanism to improve quality of care in hospice. If financial and attitudinal barriers are reduced, a systematic sampling of deaths for autopsy may provide evidence for the value of this information source.