Identifying potential indicators of the quality of end-of-life cancer care from administrative data, CC Earle, ER Park, B Lai, JC Weeks

Tags: indicators, cancer, cancer patients, American Society of Clinical Oncology, focus groups, cancer care, data systems, intensive care unit, treatments, hospice services, poor-quality care, end-of-life care, quality of care, anticancer therapies, administrative data, literature review, ICU, chemotherapy, oncology practice, Institute of Medicine National Research Council, Envisioning the National Health Care Quality Report, National Cancer Policy Board, Institute of Medicine, Enhancing Data Systems, Hospice care, family members, quality improvement, Poor Quality of Care Rationale, lung cancer patients, accepting death, Institute of Medicine NRC, hospice philosophy, Washington, DC, Emergency room, continuation, advance directives, quality indicators, death certificate, palliative chemotherapy, focus group, Ensuring Quality Cancer Care, Quality of Cancer Care, National Comprehensive Cancer Network, National Academy Press, primary care physicians
Content: Identifying Potential Indicators of the Quality of End-of-Life Cancer Care From Administrative Data
By Craig C. Earle, Elyse R. Park, Bonnie Lai, Jane C. Weeks, John Z. Ayanian, and Susan Block
Purpose: To explore potential indicators of the quality of end-of-life services for cancer patients that could be monitored using existing administrative data. Methods: Quality indicators were identified and assessed by literature review for proposed indicators, focus groups with cancer patients and family members to assess candidate indicators and generate new ideas, and an expert panel ranking the meaningfulness and importance of each potential indicator using a modified Delphi approach. Results: There were three major concepts of poor quality of end-of-life cancer care that could be examined using currently-available administrative data (such as Medicare claims): institution of new anticancer therapies or continuation of ongoing treatments very near death; a high number of emergency room visits, inpatient hospital admissions, or intensive care unit days near the end of life; and a high
proportion of patients never enrolled in hospice, only admitted in the last few days of life, or dying in an acute-care setting. Concepts such as access to psychosocial and other multidisciplinary services and pain and symptom control are important and may eventually be feasible, but they cannot currently be applied in most data systems. Indicators based on limiting the use of treatments with low probability of benefit or indicators based on economic efficiency were not acceptable to patients, family members, or physicians. Conclusion: Several promising claims-based quality indicators were identified that, if found to be valid and reliable within data systems, could be useful in identifying healthcare systems in need of improving end-of-life services. J Clin Oncol 21:1133-1138. © 2003 by American Society of Clinical Oncology.
M ANY OF the management concerns for cancer patients near the end of life as active anticancer treatment ends are similar regardless of the site of cancer origin.1 Consequently, issues such as appropriate use of aggressive interventions and access to hospice care affect a large number of patients. Concern has been expressed, however, over the lack of information available about the quality of care these patients receive.2,3 Developing measures that could identify health systems that seem unable to adequately and appropriately manage end-of-life care may help direct allocation of resources to improve palliative services. One of the challenges for quality improvement efforts is to measure performance quickly and efficiently so that rapid feedback can be provided, allowing modification of services and practices to improve the quality of care. Data for quality assessment can come from review of medical records, review of patient surveys, or analysis of administrative data such as Medicare billing claims or hospital discharge abstracts. Of these options, use of administrative data is generally the most timely and economical. Administrative data already exist, typically in a computer-readable format, making it relatively inexpensive to study large samples of patients.4 The trade-off, however, is that because they were not captured for the purpose of quality assessment, there are concerns about their completeness and accuracy.5 In this article, we present our initial work identifying, qualitatively assessing, and implementing potential quality indicators for end-of-life cancer care amenable to monitoring with current data systems. Such indicators would not be meant to analyze the care given to a particular patient or by an individual physician. Rather, they would serve to identify healthcare systems, defined by geography (eg, a state Medicaid program) or organization (eg, a managed-care organization or provider network), in which the resources to help patients transition to end-of-life care may be inadequate.
METHODS To generate and evaluate quality-of-care indicators in an area in which none exist, we used a combination of literature review, focus groups, and an expert panel.6 This study was approved by the institutional review board at Dana-Farber/Partners HealthCare System, Boston, MA. We generated a list of topics through a comprehensive literature search of MEDLINE reviewing the union of the MeSH headings and text words "quality of care," "quality of health care," "medical audit," "outcome and process assessment (health care)," "program evaluation," "quality assurance," "total quality management," and "quality indicators," intersected with the Medical Subject Headings (MeSH) "neoplasms" or "palliative care," and searched relevant databases available on the Internet.7,8 We collected and analyzed data from three focus groups recruited without incentive at Dana-Farber Cancer Institute and Brigham and Women's Hospital (Boston, MA); two groups consisted of patients with advanced, incurable cancer (n 12), and one consisted of family members of patients (n 4). All discrete concepts identified in the literature review were integrated into focus group scripts. These were pilot tested on two samples of volunteers and revised. Informed written consent was obtained from all participants. Participants discussed their impressions of all of these indicators and suggested ideas for others. The focus groups were led by an experienced clinical psychologist, audio recorded, and transcribed for analysis. From the Division of Population Sciences and Division of Psychosocial Oncology and Palliative Care, Department of Medical Oncology, DanaFarber Cancer Institute; Department of Psychiatry/Institute for Health Policy, Massachusetts General Hospital; Division of General Medicine, and Department of Psychiatry, Brigham and Women's Hospital; and Department of Health Care Policy, Harvard Medical School, Boston, MA. Submitted March 12, 2002; accepted November 25, 2002. Supported by grant no. CA91753-02 from the National Cancer Institute, National Institutes of Health, Department of Health and Human Services, Bethesda, MD. Address reprint requests to Craig C. Earle, MD, MSc, FRCPC, Center for Outcomes and Policy Research, Dana-Farber Cancer Center, 44 Binney St, 454-STE 21-24, Boston, MA, 02115; email: [email protected] © 2003 by American Society of Clinical Oncology. 0732-183X/03/2106-1133/$20.00
Journal of Clinical Oncology, Vol 21, No 6 (March 15), 2003: pp 1133-1138 DOI: 10.1200/JCO.2003.03.059 Downloaded from jco.ascopubs.org on December 28, 2015. For personal use only. No other uses without permission. Copyright © 2003 American Society of Clinical Oncology. All rights reserved.
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Table 1. Expert Panel Rankings of Potential Quality Indicators in Order of Meaningfulness and Importance Indicators of poor-quality care currently feasible with Medicare data 1. Short interval between last chemotherapy dose and death 2. Site of death: high proportion of deaths in hospital vs home 3. Frequent emergency room visits 4. High number of hospital and ICU days near the end of life 5. Low proportion of patients enrolled in hospice 6. Short interval between starting a new chemotherapy regimen and death 7. Hospice enrollment very near death Indicators of good-quality care that may be monitored in some data systems 1. Clinical trial availability and participation 2. Multidisciplinary care availability and use 3. Continuity of physician contacts Indicators of good-quality care not currently amenable to administrative data 1. Communication 2. Shared decision making 3. Advance directives 4. Pain and symptom management Not acceptable to any group as indicators of poor-quality care 1. Overuse of colony-stimulating factors 2. Noncurative metastatectomies 3. High resource use (cost) 4. Using multiple lines of chemotherapy 5. Requiring pathologic confirmation of metastatic disease Abbreviation: ICU, intensive care unit. We also recruited one expert panel of eight health-care providers involved in different aspects of end-of-life care (two academic oncologists, one community oncologist, two primary care physicians, one palliative care specialist, one infectious disease specialist, and one oncology social worker). This panel was asked to define and operationalize each indicator. As others have done,6,9-11 we used a modified Delphi method to have each participant quantitatively rate the meaningfulness of each indicator (does the indicator truly measure the quality of care?) and whether they thought the indicator addressed an issue that is an important problem in the quality of care that cancer patients receive. Average ratings were calculated and provided to the group, after which each indicator was rated again. Last, they were asked to consider ways in which each indicator was susceptible to gaming (being manipulated so that the indicator would look good even when the quality of care might actually be poor) and whether the indicator might create undesirable incentives. Transcripts of the focus groups were independently reviewed by three investigators using an overview grid to structure the content analysis.12 The transcripts were analyzed, looking for the frequency with which specific themes appeared and the level of agreement within and among participants; they were also used to identify representative quotations. Findings were subsequently compared, which involved discussing and reconciling areas of divergence. These results were combined with the expert panel ratings to summarize the key issues. RESULTS The literature review identified 1,667 citations, and on the basis of the titles, 293 abstracts were reviewed. Relevant papers were retrieved, producing 19 potential indicators ranked in Table 1 based on the mean summary ratings of the expert panel. From these papers and from the qualitative evaluation of the focus group data, three major themes specific to end-of-life cancer care that might feasibly be explored with administrative data emerged.
solid tumors respond predictably to only a limited number of anticancer drug regimens. Therefore, overuse of aggressive anticancer therapies may result in more toxicity than clinical benefit.15 Moreover, proposing new lines of treatment after successive therapeutic failures may be a way of avoiding discussion of prognosis and advance directives. To address these concerns, the following three types of indicators, which consider care that limits marginally effective therapies to be good quality care, have evolved: (1) those based on limiting the number of lines of treatment given; (2) those looking at treatment continued near death; and (3) those based on economic efficiency. For example, some authors3 have proposed that no more than 20% of non­small-cell lung cancer patients should be treated with third-line chemotherapy outside of a clinical trial. At least one managed-care organization uses the proportion of a provider's patients that receive chemotherapy in the 2 weeks before death as an indication of poor clinical judgment and tendency toward aggressive management.16 Last, others have proposed that provision of services not judged to be cost-effective is poor quality care.17 Focus groups. Indicators that limit access to treatments were not acceptable to any of the groups. In fact, patients often seemed to want access to treatments regardless of effectiveness. Both patients and family members felt that the option to try chemotherapy is an important issue of personal choice and patient autonomy, as long as the patient is aware of the possible risks and realistic likelihood of benefit. One family member of a patient stated, "It gave him a sense of control." The concept of discontinuing therapy at some appropriate time before death was generally endorsed, however, especially by patients' relatives. Some family members found that because of the continuation of anticancer treatments until very late in the disease, they had not been aware of how advanced the disease was. As a result, their loved one's death was an unexpected shock. One patient remarked, "I've seen so many deaths recently where the family really weren't aware of the impending death . . . because the treatment was going right on until the end and hospice hadn't been put in. . . . The shock factor in a couple of these cases was, I think, more so than it needed to be." Expert panel. The health professional panel viewed persistent use of chemotherapy at the end of life as the most important of the indicators examined. They felt that assessing whether treatment may have been continued too long may get at the concept of overuse in a more acceptable fashion than monitoring the number of therapies used. As one medical oncologist stated, "We can treat with many lines of chemotherapy in appropriate patients, but there's a time to stop." All groups felt that economic considerations must be kept separate from ideas of quality. High-quality care may be more costly care. Table 2 provides examples of specifications for this indicator (institution of new anticancer therapies or continuation of ongoing treatments very near death) and the other indicators.
Institution of New Anticancer Therapies or Continuation of Ongoing Treatments Very Near Death May Indicate Overuse Rationale and literature review. Palliative chemotherapy has been shown to improve the survival and quality of life of patients with advanced, incurable cancers.13,14 However, most
High Number of Emergency Room Visits, Inpatient Hospital Admissions, and Days Spent in the Intensive Care Unit Near the End of Life May Indicate Poor Quality of Care Rationale and literature review. Near the end of life, high rates of unplanned medical encounters, such as emergency room
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Table 2. Specifications of Proposed Indicators
Quality Indicator
Numerator
Denominator
Data Source
Institution of new anticancer therapies or continuation of ongoing treatments very near death may indicate overuse A high number of emergency room visits, inpatient hospital admissions, and days spent in the ICU near the end of life may indicate poor-quality care A high proportion of patients never referred to hospice, only referred in the last few days of life, or death in an acute-care setting, may indicate poorquality care
(1) Interval between the start of the last new chemotherapy regimen and death (2) Interval between the last administration of chemotherapy and death (1) Time spent in an acute-care hospital in the last 3 months* of life (2) Time spent in ICU in the last 3 months of life (3) Number of emergency room visits in the last 3 months of life (1) Number of patients who enter hospice (2) Interval between entry into hospice and death (3) Number of patients who died at home or in hospice
All patients within the system being evaluated who (1) received chemotherapy, and who (2) died from cancer (eg, identified by death certificate) All patients who died of cancer in the system under evaluation All patients who died of cancer in the system under evaluation
(1) Chemotherapy administration available in billing claims (2) Date and cause of death available from vital statistics (1) Emergency room visits, hospital stays, and ICU admissions are available from claims (2) Death in an acute-care institution is also available from discharge status on claims (1) Hospice entry and length of stay is available from Medicare hospice benefit claims
Abbreviation: ICU, intensive care unit. *Here 3 months is chosen as an example. Ideally, the period of time examined would be determined empirically by choosing a period based on variability among providers.
visits, hospitalizations, and especially ICU (intensive care unit) stays, may indicate too much focus on aggressive care, inattention to symptomatic issues, lack of advance directives, or inadequate availability or use of hospice services.16 Patients near the end of life generally report wanting to be at home as much as possible.18,19 The Health Plan Employer Data and Information Set measures the number of emergency room visits by patients with asthma as an indication of poor care,9,20 using the rationale that many of these visits could be prevented. Similarly, research in end-of-life cancer care has suggested that many such visits could possibly be prevented with appropriate home-care support, education, and focus on symptomatic care such as that provided by hospice.19,21-26 Focus groups. Early on in the course of disease, patients and families are willing to go through extremely toxic and painful treatments, especially if they have the potential to prolong survival. All groups felt that complications are expected with anticancer treatments and that hospitalization during treatment when these problems arise was largely unavoidable. When a survival benefit is less likely, however, they are less willing to accept treatment complications. In the words of one patient, "I've come to terms with dying from my cancer. I don't want to die from complications of the treatment." Expert panel. Health-care providers felt that uncontrolled pain, dehydration, and requirements for blood products were potentially preventable and should not be common causes for unscheduled medical contacts. High complication rates for palliative chemotherapy may indicate that it is not being used judiciously. For example, treating patients with poor performance status or using unnecessarily toxic regimens for incurable disease could increase hospitalizations for complications, although there was some concern about creating perverse incentives not to hospitalize patients who need it. A medical oncologist in the expert panel stated, "For most of our patients, a visit to the ICU is kind of a failure."
High Proportion of Patients Never Referred to Hospice or Only Referred in the Last Few Days of Life, or Death in an Acute-Care Setting, May Indicate Poor Quality of Care Rationale and literature review. Hospice care is felt to be beneficial at the end of life because it offers the opportunity for maximal symptom relief and time to come to terms with a terminal illness without the distractions of undergoing active interventions. Early institution of home health and hospice services has been proposed as an indication of high-quality care.27,28 Because death within 48 hours of a transfer to hospital, in general, is considered an indication of possible poor-quality care,29 for cancer patients, deaths within 48 hours of a hospice admission may reflect not poor-quality care delivered by the hospice but, rather, delayed referral. Along these lines, most patients report a preference to die at home or at a non-acute-care institution.30 As a result, the percentage of deaths at home or in hospice, versus in hospital (or within, say, 48 hours of discharge), has been proposed as a quality-of-care indicator.3,16,31 Focus groups. There was general agreement among all groups that hospice services instituted for just the last 3 to 5 days of life is not an optimal use of this important facet of cancer care. Family members expressed a wish that hospice be instituted earlier to provide assistance in the home and to assist with preparing for and accepting death. One family member participating in the focus group remarked, "I think the earlier the doctor mentions it, the better it is for the patient because the patient could plan for things ahead, rather than to spend so much time doing the treatment." There was some disagreement among the groups on the timing of hospice referral, however. Family members and physicians tended to speak more positively about hospice than did patients. Enrollment in hospice requires a patient to accept the hospice philosophy of comfort care without active intervention for the cancer. Some patients saw the suggestion of hospice as a sign
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that there was no hope, everyone had given up on them, and the end was near. Consequently, patients did not see very early referrals many weeks or months before death as necessarily good-quality care. As one patient put it, "Everybody understands hospice to be: `This is the end.' I think at the beginning that would be devastating. It says, `We don't really believe we have any help for you.'" Expert panel. In response to probes about patients' concerns with early hospice referral, providers insisted that low rates of referral and late referrals were the common problems; referrals made inappropriately early in the disease course are currently uncommon. Physicians also noted that patients being discharged from hospital a few days before death ("sent home to die") were not receiving maximal benefits of hospice. The panel felt that hospice use may largely reflect the local availability of hospice services and patients' insurance restrictions and not necessarily physicians' decisions to make referrals, making it a good indicator of the resources available in a local health-care system. The expert panel also ranked very highly the concept that high rates of death in hospital or ICU may indicate poor-quality care. Indicators Not Currently Amenable to Administrative Data Although psychosocial care, multidisciplinary treatment, pain and symptom management, advance directives, and communication emerged from the literature as potential indicators of good end-of-life care and were endorsed as critical components of excellence by patients, families, and experts, we believe that they are not presently amenable to monitoring with currently available administrative data (Table 1). The quotations that follow reflect the importance of these issues to family members: one family member remarked, "My husband . . . said, `Am I going to die soon?' And the answer was `No, not soon.' And I just could have screamed." Another family member stated, "At one point I said to the nurse, `Are you going to be seeing us in 5 years?' And she just kinda went, `I would be surprised.' And I said to her, `Thank you.'" The future of quality improvement for end-of-life cancer care depends on making these topics measurable.32 For example, the Patient Self Determination Act requires hospitals to provide patients with information about resuscitation, advance directives, and designations of health-care proxies and durable power of attorney, but it does not require them to record a discussion about these issues. However, organizations willing to accept the increased documentation required could find ways to ensure that such discussions and their outcome are noted in electronic records. Similarly, although not currently captured in Medicare claims, care provided by psychiatrists, social workers, dietitians, and chaplains should be feasible to monitor in many data systems. The concept probably closest to being measurable is pain control. The Joint Commission on Accreditation of Healthcare Organizations now requires screening and treatment for pain. Pain ratings have become a fifth vital sign, recorded at each visit. If these data can be electronically recorded, as weight and other vital signs are in many systems at present, pain levels and trends over time could be monitored and correlated with processes of care. More ambitious are attempts to collect performance status or symptom data at each visit4 so that, eventually, the breadth of
end-of-life care proposed in practice guidelines33 could be continuously monitored. DISCUSSION Quality medical care has been described as delivering optimal health services34 with technical proficiency;35 avoiding overuse, underuse, or misuse of technologies;36 and incorporating patientcentered preferences in shared decision making.28 The concepts of quality our focus groups arrived at describe what many would consider a good death for patients with incurable cancer. Taken together, they identify patients who have had access to both anticancer treatments and supportive care but whose decline is also anticipated, allowing timely institution of palliative services. Caution must be exercised when selecting and interpreting quality indicators, however. Indicators alone cannot be used to determine that poor care was delivered. They can only serve as red flags to identify outlier areas where the quality of care delivered by certain health-care systems or to certain patient groups differs from the norm and needs to be further investigated.37 The indicators we have identified describe things that can happen to any patient, even when receiving the best of care, but they should not be happening with unusual frequency. Because dying is a highly personal experience, it is impossible to try to assess the quality of end-of-life medical care without imposing values in the judgment. Our focus groups told us that it is good to have access to a range of treatment options and support, to minimize emergency room visits and hospitalization, and to decrease the "medicalization" of death. Although it is possible that some constituencies do not fully share these views, these concepts can serve as a starting point for further exploration. Care must be taken to ensure that indicators do not foster perverse incentives, however, or allow gaming of the system to make the quality measure look artificially good.38 For example, discharging a patient from the hospital shortly before death could make it seem as though a medicalized death was avoided; however, the short length of stay in hospice would then be telling. Similarly, complication rates and time of discontinuation of chemotherapy can be made to look good by simply recommending against treatment for many patients, but the rates of chemotherapy use could also be reported to provide a context for interpretation of the data. There are several added challenges particular to using administrative data for quality assessment. Because the data were not created for research, there is a paucity of specific clinical information about the disease, the comorbid conditions, and the technical and interpersonal abilities of providers. For example, without linked registry data, stage and histology of disease may not be known. Even with high-quality registry data, however, it is usually not possible to determine when a cancer has relapsed and become incurable. Consequently, assessment of survival, an important outcome in medicine, would be more a function of reporting characteristics than reality. The currently most feasible approach is to look back from death to evaluate the care that was provided as death from cancer approached. Although the timing of death is something that is only known with hindsight, cancer is one of the most predictable causes of death. The fact that the same measures could apply to most patients with many advanced incurable solid tumors (eg, such as lung or colon cancer, as
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opposed to curable testicular cancer or leukemia) can help provide adequate numbers of cases for analysis. Use of administrative data is not always a precise approach to quality assessment. However, if the indicators can be shown to identify potentially important problems with care, they can provide a practical and economical tool for profiling quality of care or screening for problems with care. There are some limitations to this study. The participants were drawn from major academic referral centers, likely not a representative pool. The patients and family members attracted to the focus groups seemed to be proactive people who had already thought a lot about the care they experienced. The clinicians were selected for their extensive experience in caring for dying patients and, therefore, also may not have been a representative sample of health-care professionals. Still, we feel that these groups provided articulate and well thought out ideas about the major quality issues in end-of-life cancer care. Where do we go from here? An important component of this exploratory work is to begin the discussion about these issues, getting feedback from peers in the oncology community. We are working to operationalize these indicators using Medicare data, supplemented by local information systems, and to confirm their accuracy through chart review. Quality indicators can be used in many different settings, however, so it would be premature to be overly prescriptive about how they should be used. The next steps will be to develop achievable benchmarks of care and to field test the implementation of promising indicators in provider organizations, looking for health-care systems with outlier rates of these indicators. The National Cancer Institute is beginning to address some of these issues in its Cancer Care Outcomes Research and Surveil-
lance Consortium, a large population-based study of cancer treatment and outcomes for patients with lung or colorectal cancer that will collect detailed data from medical records and surveys of patients and providers (http://healthservices.cancer.gov/cancors/overview.html). An effort such as the Cancer Care Outcomes Research and Surveillance study would be difficult to sustain as a surveillance method, but it has the potential to provide data to validate these concepts through surveys that include patient and family perceptions of the quality of care. Future goals would be to improve the quality of data systems, such as by linking high-quality tumor registries to Medicare and other sources of claims to monitor processes of care in a more timely fashion39 and by finding ways to evaluate other important processes of multidisciplinary care, pain and symptom management, and elements of communication. The United States Congress has mandated the Federal Agency for Healthcare Research and Quality to produce an annual National Healthcare Quality Report,40 and valid measures of the quality of end-of-life care could be a valuable component of this report.41 In these ways, both payers and patients could have useful information with which to evaluate care and select health plans and providers, and institutions and networks could monitor and improve their ability to deliver high-quality end-of-life care to patients with advanced cancer. ACKNOWLEDGMENT We thank the patients, family members, and health care providers who participated in our focus groups. We also thank the Dana-Farber Health Communications Core, Elizabeth Harden, Eugenie Seifer, and Meredith Obst, for their assistance with the focus groups.
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CC Earle, ER Park, B Lai, JC Weeks

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Polymer handbook, 6 pages, 0.29 Mb

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