and Hsien Seow2
(1)
Johns Hopkins University, Rm 609, 624 N Broadway, Baltimore, MD, 21205, Norway
(2)
Juravinski Cancer Center, McMaster University, 699 Concession Street 4th Floor, Room 4-229, Hamilton, Ontario, L8V 5C2, Norway
Abstract
Measuring the quality of pain management is essential for comparing providers, targeting quality improvement efforts, and measuring the impact of quality improvement initiatives in palliative care. Recent development of quality indicators in cancer palliative care and in general palliative care populations has produced a variety of pain management indicators that have been evaluated for feasibility, reliability, and validity. Indicators are available for outpatient, inpatient, intensive care, and hospice settings, and address structure, process, and outcome, as well as the spectrum of care through screening, assessment, treatment, and follow-up. Quality measurement in pain is facilitated by the availability of well-validated pain assessment tools. However, implementation of these indicators is limited by the challenges of assessment in vulnerable populations; lack of consistent documentation of many aspects of pain management in the medical record; and the lack of evidence for correlation between quality indicators and patient outcomes. Further research is needed for pain indicators in children and those who cannot report pain, how to tailor pain quality measurement to different populations and settings, and on better integration of quality measurement and clinical care. More development is also needed on the nonphysical aspects of pain and its management, and interaction between the quality of pain management and other symptoms and domains of palliative care. The collection of patient-reported outcome data and the use of structured electronic medical record (EMR) documentation also have the potential for improving the measurement of the quality of pain management. Measuring the quality of pain management is essential for comparing providers, targeting quality improvement efforts, and measuring the impact of quality improvement initiatives in palliative care. Recent research has produced indicator sets focusing on pain management, in cancer palliative care, and in general palliative care populations that have been evaluated for feasibility, reliability, and validity. Indicator sets are available for outpatient, inpatient, intensive care, and hospice settings, and address the spectrum of care, through screening, assessment, treatment, and follow-up. Quality measurement in pain is facilitated by well-validated pain assessment tools but limited by the challenges of assessment in vulnerable populations, lack of consistent documentation of many aspects of pain management in the medical record, and the lack of evidence for correlation between quality indicators and patient outcomes. Collection of patient-reported outcome data and the use of structured EMR documentation have the potential for improving the future measurement of the quality of pain management.
Introduction
Despite strong evidence that interventions can greatly improve pain management for persons with advanced cancer, these advances have not been completely translated into clinical practice. Routine quality measurement is one potential solution that can improve the delivery of pain interventions. A quality indicator or quality measure is an agreed-upon process or outcome measure that is used to assess quality of care, specified with a numerator and denominator to indicate the intended population, recommended care, and exclusions.
Quality indicators are population-level measures expressed using rates, as opposed to a measurement tool such as a pain visual analog scale, which is used to collect data at the individual patient level. For example, while a patient’s pain could be assessed with a visual analog scale, the corresponding quality indicator could also measure the rate of pain screening on an entire hospital unit. Indicators also specify data elements and instructions for data collection, timing, and descriptions of data analysis and reporting. They are intended to be used routinely, can provide feedback to guide short-term quality improvement or longer-term restructuring of care, and generally draw on administrative data, medical records, or data collected directly from patients and families (e.g., via survey).
Quality indicators can be classified as pertaining to structure (the environment in which health care is provided), process (how health care is provided), and outcome (the consequences of health care) (Donabedian 1988). Accurately measuring care for comparing quality or as a baseline for quality improvement interventions requires quality indicators that are supported by experts and research evidence, scientifically valid and useful, and feasible to implement (Campbell et al. 2002). Indicators’ validity depends on the validity of the measurement of pain or the associated outcome, including the instrument used and the completeness of documentation. For example, for a pain indicator that applies only to severe pain, if pain is documented only for half of patients, the denominator (patients with severe pain) will be incomplete and the generalizability of the quality data will be limited. Indicators should also be feasible to efficiently extract from existing data sources or obtain from patients or families and reliable when assessed by different abstractors or methods. Ideally, indicator results should also be associated with health outcomes valued by patients and families.
This chapter reviews frameworks for quality indicators in palliative care relevant to pain management, key palliative care quality indicators sets addressing pain, and palliative care research applying pain quality indicators. The chapter concludes by discussing barriers to developing and applying palliative care quality indicators in pain and future research directions.
Frameworks for Quality Indicators in Palliative Care
Due to the need to address deficits in palliative and end-of-life care, several seminal US initiatives have aimed to develop frameworks for quality indicators in palliative care. First, the National Consensus Project (NCP) (National Consensus Project 2004) helped defined broad clinical domains for palliative care, based on professional consensus from five major US palliative care organizations. Specifically, the domains of quality palliative care include: structure and processes of care; physical aspects of care; psychological and psychiatric aspects of care; social aspects of care; spiritual, religious and existential aspects of care; cultural aspects of care; care of the imminently dying patient; and ethical and legal aspects of care. The guidelines are applicable to specialist-level palliative care delivered in a range of treatment settings, as well as to the work of providers in primary treatment settings where palliative approaches to care are integrated into daily clinical practice.
Based on the NCP domains, the National Quality Forum (NQF) endorsed a Palliative Care Framework (National Quality Forum 2006) to develop a set of preferred practices related to palliative and hospice care. They identified and endorsed 38 preferred practices as suitable for implementation by palliative care and hospice programs across many practice settings. The framework aimed to lay the foundation for the development of performance measures for evaluating these programs.
There are many challenges in translating the broad domains defined by these projects into measurable aspects of care, and in evaluating them for feasibility, reliability, and validity. Unlike some clinical areas (e.g., cardiovascular care), there are few randomized trials to support evidence-based quality indicators in palliative care. Quality measurement often depends on aspects of care that may be uncommonly or inconsistently documented, such as reports of pain and when pain medications were administered. Defining the population or denominator where indicators apply may also be problematic in palliative care, since some aspects of palliative care should begin at diagnosis of a chronic illness.
Two projects have focused on expanding these frameworks to make them more applicable to quality indicators, one focusing on end-of-life cancer care (Seow et al. 2009a, b) and one on hospice (Carolinas Center for Medical Excellence 2008). Both projects also have relevance for the development and application of palliative care quality indicators in general. Both built on the previous initiatives described above, updated reviews of existing indicators and data sources, and obtained input from experts.
Figure 7.1 displays the framework for assessing cancer quality indicators for end-of-life care, as defined in the National Cancer Institute (NCI) cancer continuum of care (Epstein and Street 2007). Yet even though the framework is defined as end-of-life, end-of-life issues may also be relevant from the time of diagnosis, as in the consensus documents on palliative care. Some quality domains particularly relevant at the end-of-life, such as pain and fatigue, also apply throughout the entire spectrum of care. Isolating issues for a particular disease or a particular point in the disease trajectory is difficult and often impractical. Therefore the framework is purposefully broad so as to include the range of issues cancer patients might face at the end of life, while not neglecting patients with comorbidities or those facing these issues at other points in the disease continuum. The framework should also be applicable, with modifications, to a more general palliative care population.
Fig. 7.1
Framework for developing and assessing quality indicators for cancer care at the end-of-life
The framework identifies five steps for developing and assessing a quality indicators, defining the (1) population of focus; (2) broad quality domains; (3) specific target areas; (4) steps of the care process; and (5) evaluation criteria of quality indicators. Put differently, the first step identifies who to measure, steps 2–4 identify what to measure, and step 5 assesses how well the indicator works. The framework also addresses a broad range of quality indicators, system-level issues (general structure and processes of care) as well as person-level concerns (e.g., pain management). In areas where few quality indicators exist, the framework can also help guide indicator development, whereas in areas where indicators exist but are not widespread, the framework can help to identify barriers and facilitate implementation and adoption. Each of the steps in the framework is briefly summarized below.
Population of Focus: The framework’s first step defines the relevant population and denominator for end-of-life quality indicators. As such, a critical first step in using this framework for a particular domain or project would be to specify an appropriate and definable population and setting for measurement. For example, the population of focus might include all patients from the time of cancer diagnosis when measuring quality of communication, but only include patients at high risk of dying (such as those with widely metastatic disease and poor function or individuals no longer eligible for chemotherapy) when measuring receipt of hospice care.
Broad Quality Domains: The framework builds on the broad domains of quality palliative care endorsed by the NCP and NQF, which have been widely recognized and circulated.
Specific Target Areas: Within each broad domain of quality end-of-life cancer care, there exist specific target areas for indicators of quality end-of-life care.
Steps of the Care Process and Outcomes: Quality indicators may also target a specific step in the care process or a specific patient outcome. The framework adapted the process steps developed by the QA (Quality Assessment) Tools project and applied in the Cancer-Quality-ASSIST project to develop quality indicators for supportive cancer care, described in more detail later in this chapter (Lorenz et al. 2009). Steps include screening, assessment / diagnosis (more detailed evaluation of those with a positive screen), treatment / implementation, and follow-up (whether the provider checks on the impact of the intervention). In addition, the expert panel suggested adding care coordination due to the multidisciplinary and multisite nature of cancer care. Quality indicators may also focus on transitions between steps, such as the time between diagnosis and treatment, and transfer of information and care responsibilities between different types of providers and settings. Considering these steps can help contextualize quality measurement and provide a clearer portrait of end-of-life care delivery, helping to identify when documentation will occur and by whom.
Evaluation Criteria of Quality Indicators: The framework’s final step sets criteria for evaluating the quality indicators’ appropriateness for use for quality improvement and accountability. The framework adapted and expanded upon the current NQF criteria used to evaluate quality indicators: importance, scientific acceptability, usability, and feasibility (National Quality Forum 2008). The first criterion, importance, denotes whether an indicator addresses a critical component in care, affects outcomes, and has room for improvement. Scientific acceptability includes the concepts of validity and reliability. The concept of feasibility depends on the availability of quality data that can be obtained or extracted without undue burden, and usability applies to how the results of the indicator can be applied to improve care.
Although many indicators are currently available, much more coordination, rigorous evaluation, further development and supporting evidence are needed to advance the field and make quality indicators an accepted part of measuring the quality of palliative care. The proposed framework aims to facilitate the development, assessment, and implementation of quality indicators specific to cancer end-of-life care, but can be adapted for palliative care quality indicators in general. Using this framework, we can more consistently and effectively measure and improve the quality of palliative care. Indicator developers can also use this framework to build indicators that are scientifically acceptable and valid and reflect the broad and specific dimensions of palliative care, and expand the evidence to support their widespread use. The framework may also inform quality programs seeking to choose indicators and policymakers searching for priority areas where further evidence is needed. Ultimately, frameworks for quality indicator development and implementation can also help to refine effective and efficient ways to use indicators to evaluate and improve pain management and palliative care.
Key Quality Indicator Sets in Palliative Care and Pain
Within the past decade, additional research on the development and characteristics of quality indicators for palliative care and pain has been conducted. Quality indicator sets relevant to palliative care can be derived from administrative claims data, medical records, and/or patient surveys. With the exception of claims data-based indicator sets (since there is no information on pain in claims), palliative care indicator sets all include pain indicators. Pain quality indicators can be used for a variety of purposes, including benchmarking the level of quality of care; identifying areas of care in need of improvement; or evaluating the success of quality improvement projects. Some indicator sets focus on cancer care, some on specific settings (such as hospice or intensive care unit care), and some are more general. Others are limited to palliative care and still others include palliative care-relevant indicators as part of a larger set.
Several recent reviews have summarized available palliative care quality indicators. A systematic review of palliative care quality indicators (Pasman et al. 2009) included 16 eligible publications and identified 142 quality indicators, covering all but one domain (cultural aspects) of palliative care.
Within the domain of physical aspects of care, 44 unique quality indicators were identified, of which 16 were specifically for pain. All quality indicators included had numerators and denominators that were defined or could be directly deduced from the description, or provided a performance standard for the population. The palliative care quality indicators’ sets included various patient groups (e.g., cancer, elderly people) and specific health settings (e.g., nursing home, home, intensive care unit), and most indicator sets meeting the eligibility criteria were from the United States (US). In another review, the PEACE (Palliative Care Quality Measurement Project) addressed quality indicators and associated measurement instruments relevant to palliative care, with a focus on hospice (Carolinas Center for Medical Excellence 2008) and another systematic review focused on measures relevant to cancer end-of-life care (Lorenz et al. 2006).
Since these reviews were conducted, a number of other palliative care quality indicator projects have been completed with content relevant to pain management, and some of the projects cited in these reviews have also recently undergone additional development. These indicator sets are compiled through various data collection methods, including medical record reviews and patient surveys; in different populations, including cancer-specific and nonspecific indicators sets; and in various settings, including inpatient and outpatient care and hospice. Some of the indicator sets cited in previous reviews, and many newer indicator sets, have now been evaluated for feasibility, reliability, and/or validity (see e.g., Dy et al. 2010; Walling et al. 2010; Fine et al. 2010). Select indicator sets are summarized in Tables 7.1 and 7.2 and below.
Table 7.1
Selected quality indicator sets relevant to palliative care that include pain (cancer-specific)
Set | Description | Relevant domains | Evaluation | References |
|---|---|---|---|---|
American Society of Clinical Oncology (ASCO) Quality Oncology Practice Initiative (QOPI) | Outpatient oncology (EOL part of larger measurement set) In routine use | Pain, dyspnea, communication/decision-making, utilization (Dana-Farber indicators), chemotherapy decision-making, nausea/vomiting (chemo), anemia | Community oncology practices | Jacobson et al. (2008), McNiff, Personal communication. Summary of QOPI Measures, Spring 2008 |
Cancer quality-ASSIST | Outpatient and hospital | Pain, dyspnea, delirium, insomnia, fatigue, nausea/vomiting, advance care planning | Reviewed for validity by expert panel, and for feasibility, validity, and reliability with professional chart abstraction | Dy et al. (2010) |
Japanese end-of-life cancer quality indicators | Pain, dyspnea, delirium, oral care, decision-making/preferences/communication, psychosocial care, distress, religion | None | Miyashita et al. (2008) | |
QA tools (cancer) | Outpatient | Pain | Limited for pain | Lorenz et al. (2006) |
Table 7.2
Selected quality indicator sets relevant to palliative care that include pain (noncancer-specific)
Set | Description | Relevant domains | Evaluation | References |
|---|---|---|---|---|
University Health System Consortium (UHC) | Hospital Revised 2007 | Pain, dyspnea, communication/prognosis, psychosocial, coordination (discharge planning) | Multicenter evaluation 2004 and 2007, ongoing | Twaddle et al. (2007), UHC personal communication |
VHA | Intensive care | Pain, communication/decision-making, psychosocial, spiritual | Multicenter evaluation ongoing | Nelson et al. (2006) |
National Hospice and Palliative Care Organization (NHPCO) National Data Set (NDS)
Related posts: Educating Patients and Caregivers About Pain Management: What Clinicians Need to Know
Palliative Care Clinical Trials: Generalizability and Applicability in Hospice and Palliative Care Practice
 Pain Assessment Tools in Palliative Cancer Care
Pharmacogenetics of Pain: The Future of Personalized Medicine
CAM in Chronic Pain and Palliative Care
 Pain Imaging
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