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Progress in Quality-of-Care Research and Hope for Supportive Cancer Care Karl A. Lorenz, Veterans Administration, Greater Los Angeles Healthcare System; RAND Corporation, Santa Monica; David Geffen School of Medicine at University of California at Los Angeles, Los Angeles, CA

Supportive care encompasses the direct and treatment-related impacts of cancer, including the management of pain and other symptoms, and the psychosocial context of cancer, including spirituality and the challenges of caregiving. Patients and families endorse these concerns as critical aspects of health-related quality of life (HRQOL), and the need to provide excellent supportive care is relevant and important in all phases of cancer care.1 As earlier diagnosis and more effective treatments extend the experience of patients living with cancer or as disease-free survivors, seamless integration of supportive principles and approaches becomes even more imperative. Improving supportive cancer care is justifiably a priority, because cancer and its complications are associated with tremendous human suffering, because treatment typically holds the potential to harm as well as benefit, and because late-stage cancer in particular consumes enormous resources.2,3 Palliative care shares a focus on HRQOL, and is expanding rapidly in the United States and elsewhere.4-6 Palliative care is often hospital based and includes various service delivery models; however, limited evidence informs how such services, including hospice, can best serve cancer patients. Fortunately, the published literature includes a lot of evidence about what clinical interventions (eg, opioids for cancer pain), as opposed to service models (eg, opioids initiated by oncologists v palliative nurses) improve aspects of the HRQOL of cancer patients.7 Palliative care is often implemented late in patients’ care, but the clinical toolbox of palliative care may have much to offer patients and families with earlier-stage illness, and innovative programs integrate palliative services throughout the cancer chronology.8 Patients and families will be best served when oncology, palliative care, and the services that cancer patients need—including surgery and primary care—are fully integrated in various settings that cancer patients rely on. To illustrate using a recent example of an analysis of the outcomes of intensivist care from a large database, it is unfortunate that after decades of investment, fundamental questions persist as to how to best organize medical intensive care unit services.9 There is troubling evidence that many health care innovations are not sustained.10 Indeed, we might foster innovative programs and invest extensively in supportive care resources without improving HRQOL of the broad population of cancer patients and families. How can we abet the translation of relevant science into care improvement, promote programmatic development from the outset to best serve patients and families, and also ensure that supportive care improvements are sustained? Journal of Clinical Oncology, Vol 26, No 23 (August 10), 2008: pp 3821-3823 DOI: 10.1200/JCO.2008.18.7294

An important and necessary solution to guide appropriate investment in supportive cancer services including palliative care is an accelerating focus on quality of care that transcends disciplinary boundaries. Quality of care has been defined as “the degree to which health services for individuals or populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge.”11 In the case of supportive cancer care, that means that the focus of quality should be on helping patients achieve a higher HRQOL and helping providers deliver on processes of care (eg, prophylactic anti-emetics when the patient is at high risk for nausea and vomiting) that promote better HRQOL. In addition to outcomes or processes, quality can also focus on structure (eg, the presence of interdisciplinary providers in oncology clinics).12 If we take a societal view, we might consider limiting inappropriate care as an aspect of quality. Types of utilization may be harmful, and patients and families support the conceptual relationship between excess utilization and quality (eg, frequent late-life emergency department visits).13 This issue highlights the nascent capacity to identify which supportive issues are most important to patients and families, and which interventions will help them achieve a better HRQOL from the time of a cancer diagnosis. It also offers an emerging set of tools to evaluate the quality of supportive cancer care. Resource allocation and innovation should be driven by information about what current approaches are achieving results for patients and families, and concordance between our clinical practices and high-quality supportive care is likely to grow in importance to payors.14 We need to muster our collective will to ensure that developing tools reflect appropriate patient- and familycentered concerns as well as the best clinical and professional input. These tools and other incentives must be appropriately tested, and they should become a focus for directing the resources to support continuous quality improvement. This issue features some important developments related to the quality of supportive cancer care in the United States, Canada, Australia, Europe, and Japan, and intentionally includes reports addressing supportive oncology care in general oncology and palliative settings. Recent efforts to improve supportive and palliative care, establish guidelines, and standardize practice are reviewed by Ferrell et al,15 who highlight some of the implications for practice, research, and professional education. American Society of Clinical Oncology’s Quality Oncology Practice Initiative (QOPI) focuses on developing and testing routinely © 2008 by American Society of Clinical Oncology

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Karl A. Lorenz

reported measures to promote quality improvement in oncology.16 QOPI’s efforts encompass supportive care as well as other aspects of cancer delivery. Jacobson et al17 document significant variation in supportive care, even in a highly motivated group of oncology practices, and illustrate an approach to promoting quality that could be used more widely. Several authors highlight the use of decedent family surveys to access information about late life cancer care. Finlay et al18 found that palliative consultation was associated with family reports of greater satisfaction among the families of cancer patients, and that variation in reports of decedent care suggests approaches for improvement. In Japan, Miyashita et al19 describe postbereavement surveys and other innovative tools that are being used to capture information about supportive cancer care. Australia raised the profile for cancer by establishing Cancer Australia, and is supporting routine palliative data collection through the Palliative Care Outcomes Collaborative.20,21 Currow et al22 describe feasibility and outcomes of routine data collection in community palliative providers under challenging resource and data management limitations. This innovative Australian model illustrates how routine data can inform aspects of cancer delivery, such as hospice services. Earle et al23 offer insights based on highly feasible administrative monitors of late life utilization. Concern about excessive utilization in advanced cancer care is likely to grow due to increasing resource constraints as well as demographic changes. This analysis suggests trends of increasing intensity in late life care, which warrant further investigation. Similar measures have been adopted and are being modified for use in Canada, where they are publicly reported.24 European investigators are improving the tools for describing care in clinical settings, as described by Kaasa et al.25 Similar to the Patient Reported Outcomes Measurement Information System project in the United States,26 this effort attempts to develop better patient-reported measures of pain, depression, and cachexia, along with tools for routine symptoms reporting to inform clinical trials and potentially clinical care. The Canadian province of Nova Scotia has been pioneering a range of quality measures including those that address supportive care.27 As part of that effort, Grunefeld et al28 investigated the limitations of current measures for evaluating communication in clinical settings and for monitoring quality. Investigators undertook a project to describe a set of standards for supportive cancer care that apply to primary care, oncology, and palliative settings. The RAND Assessing Symptoms Side Effects and Indicators of Supportive Treatment (ASSIST) Project describes specific standards that are currently being piloted with the support of the Department of Veterans Affairs, Agency for Healthcare Research and Quality, and the National Cancer Institute.29 ASSIST provides a robust set of metrics for comprehensively evaluating the current state of supportive cancer care, and these reports provide a clinical description of the standards for communication, pain, depression, and nausea and vomiting.30-33 Clinicians will support the monitoring of their performance when standards make clinical sense, are feasible to implement, and when monitoring is accompanied by resources to facilitate demonstrable improvements in care. The context for implementing quality measurement is critical, as illustrated using several cases in this issue. With regard to improving feasibility, QOPI is expanding a Web-based 3822

© 2008 by American Society of Clinical Oncology

platform; the Veterans’ Administration is supporting a stand-alone data collection center as well as routine record review using nationally available electronic medical records; and Australian providers report their results on paper but have access to technical support, and the measures that they collect are extremely simple. All of these efforts use metrics developed with close clinician involvement. None of them yet have fully developed feedback loops to influence rational service development—in the policy and funding stream, clinical governance, or resource allocation—to promote quality improvement. In the future, it is hoped that we will achieve a greater assurance about the quality of supportive cancer care, and a focus on achieving evidence-based standards for supportive cancer care might lead to unexpected innovation. Current practices certainly do not guarantee what many of us would hope for in the quality of supportive cancer management. Even in the case of cancer pain, where the research evidence for clinical intervention is relatively robust, and there has been a strong focus for more than a decade on deficiencies in practice,34 unfortunately we still cannot reliably assure our patients nor their family members that they will receive excellent pain management.35-39 Perhaps we should modify the so-called pain as the fifth vital sign. Perhaps we should institute measures to routinely detect depression when pain is present, and that should be managed in oncology practices. Perhaps we should strengthen multidisciplinary professional training for physicians, nurses, and social workers. Perhaps we should pay oncology practices for better pain management. Maybe none of these things are needed, but why foreclose possibilities if we can keep the focus on benefit to cancer patients and their families? We need to educate the public to understand and expect higher supportive care quality, require our politicians to deliver the changes to achieve it, and learn to practice with quality of care in mind ourselves. Almost daily, media reports remind us that cancer affects even the wealthiest, most famous, and influential among us. To turn the abused and often misleading metaphor on its head, we need to stop battling against cancer, and battle to achieve better living with cancer, whatever its outcome. In a series of essays that resonated with me personally (and no doubt many others), the late physician, Roger Bone, wrote extensively of his experience living with and dying of metastatic renal cell carcinoma. “At least once a week I make special rounds on my institution’s chemotherapy or radiotherapy unit. As I approach a patient, I introduce myself as a physician with a probably terminal illness. I then ask if I can discuss my thoughts and feelings about how I deal with it and about the peace I have found. This relatively neglected aspect of medical care is not easy, but we physicians who care for patients must learn to do it. I myself have found peace after these encounters. Part of this peace comes from bonding— even if temporary—that takes place when you and the patient know you will take a similar journey— or at least that neither of you will make the journey alone.”40 Empathy is certainly one of the most powerful motivations to action. Because of cancer’s profound impact, empathy should motivate politicians and other public figures, us as providers, and our patients, to expect and demand that we do a better job in supportive cancer care. Let us put aside all our shibboleths and put our focus on quality. AUTHOR’S DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Although all authors completed the disclosure declaration, the following authors or their immediate family members indicated a financial interest. No conflict exists for drugs or devices used in a study if they are not being JOURNAL OF CLINICAL ONCOLOGY

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Overview

evaluated as part of the investigation. For a detailed description of the disclosure categories, or for more information about ASCO’s conflict of interest policy, please refer to the Author Disclosure Declaration and the Disclosures of Potential Conflicts of Interest section in Information for Contributors. Employment or Leadership Position: None Consultant or Advisory Role: None Stock Ownership: None Honoraria: None Research Funding: Karl A. Lorenz, Amgen Expert Testimony: None Other Remuneration: None

REFERENCES 1. Travis S, Hunt P: Supportive and palliative care networks: A new model for integrated care. Int J Palliat Nurs 7:501-504, 2001 2. National Quality Forum: Quality of Cancer Care Performance Measures Project. http://www.qualityforum.org/projects/ongoing/cancer/index.asp 3. Koroukian SM, Beaird H, Madigan E, et al: End-of-life expenditures by Ohio Medicaid beneficiaries dying of cancer. Health Care Financ Rev 28:65-80, 2006 4. Morrison RS, Moroney-Galin C, Kralovec PD, et al: The growth of palliative care programs in United States hospitals. J Palliat Med 8:1127-1134, 2005 5. Pantilat SZ, Rabow MW, Citko J, et al: Evaluating the California Hospital Initiative in Palliative Services. Arch Intern Med 166:227-230, 2006 6. Wright M, Wood J, Lynch T, et al: Mapping levels of palliative care development: A global view. J Pain Symptom Manage 35:469-485, 2008 7. Lorenz KA, Lynn J, Dy SM, et al: Evidence for improving palliative care at the end of life: A systematic review. Ann Intern Med 148:147-159, 2008 8. World Health Organization: WHO Cancer Palliative Care. http://www.who.int/cancer/palliative/en 9. Levy MM, Rapoport J, Lemeshow S, et al: Association between critical care physician management and patient mortality in the intensive care unit. Ann Intern Med 148:801-809, 2008 10. Seow H, Phillips CO, Rich MW, et al: Isolation of health services research from practice and policy: The example of chronic heart failure management. J Am Geriatr Soc 54:535-540, 2006 11. Institute of Medicine: Definition of quality. http://www.iom.edu/CMS/ 8089.aspx 12. Donabedian, A: Explorations in Quality Assessment and Monitoring, Volume I: The Definition of Quality and Approaches to Its Assessment. Ann Arbor, MI, Health Administration Press, 1980 13. Earle CC, Park ER, Lai B, et al: Identifying potential indicators of the quality of end-of-life cancer care from administrative data. J Clin Oncol 21:1133-1138, 2003 14. National Committee for Quality Assurance: Clinician-level measures project. http://www.ncqa.org/tabid/745/Default.aspx 15. Ferrell B, Paice J, Koccywas, M: New standards and implications for improving the quality of supportive oncology practice. J Clin Oncol 26:3824-3831, 2008 16. The Quality Oncology Practice Initiative: http://www.asco.org/portal/ site / ASCO / menuitem . 56bbfed7341ace64e7cba5b4320041a0 / ?vgnextoid ⫽ 31f0dd224254c010VgnVCM100000ed730ad1RCRD&ID⫽ILC-VU-GENERAL& attr⫽qopi 17. Jacobson JO, Neuss MN, McNiff KK, et al: Improvement in oncology practice performance through voluntary participation in the Quality Oncology Practice Initiative. J Clin Oncol 26:1893-1898, 2008

18. Finlay F, Shreve S, Casarett D: Nationwide Veterans Affairs quality measure for cancer: The Family Assessment of Treatment at End of Life. J Clin Oncol 26:3838-3844, 2008 19. Miyashita M, Morita T, Hirai K: Evaluation of end-of-life cancer care from the perspective of bereaved family members: The Japanese experience. J Clin Oncol 26:3845-3852, 2008 20. Cancer Australia. http://www.canceraustralia.gov.au/ 21. Palliative Care outcomes collaborative. http://www.health.gov.au/ palliativecare 22. Currow DC, Eagar K, Aoun S, et al: Is it feasible and desirable to collect voluntarily quality and outcome data nationally in palliative oncology care? J Clin Oncol 26:3853-3859, 2008 23. Earle CC, Landrum MB, Souza JM, et al: Aggressiveness of cancer care near the end of life: Is it a quality-of-care issue? J Clin Oncol 26:3860-3866, 2008 24. Cancer Care Ontario Cancer System Quality Index: http://www.cancercare .on.ca/english/home/ocs/qpi/csqi/ 25. Kaasa S, Loge JH, Fayers P, et al: Symptom assessment in palliative care: A need for international collaboration. J Clin Oncol 26:3867-3873, 2008 26. Patient Reported Outcomes Measurement Information System (PROMIS): http://www.nihpromis.org/default.asp 27. Grunfeld E, Lethbridge L, Dewar R, et al: Towards using administrative databases to measure population-based indicators of quality of end-of-life care: Testing the methodology. Palliat Med 20:769-777, 2006 28. Grunfeld E, Folkes A, Uruqhart R: Do available questionnaires measure the communication factors that patients and families consider important at end of life? J Clin Oncol 26:3874-3878, 2008 29. Lorenz KA, Dy SM, Naeim A, et al: Quality Measures for Supportive Cancer Care: The Cancer Quality-ASSIST (Assessing Symptoms, Side Effects, and Indicators of Supportive Treatment) Project. J Pain Symptom Manage (in press) 30. Dy SM, Lorenz K, Naeim A, et al: Evidence-based recommendations for cancer fatigue, anorexia, depression, and dyspnea. J Clin Oncol 26:3886-3895, 2008 31. Dy SM, Lorenz KA, Naeim A, et al: Evidence-based standards for cancer pain management. J Clin Oncol 26:3879-3885, 2008 32. Walling AM, Lorenz KA, Dy SM, et al: Evidence-based recommendations for information and care planning in cancer care. J Clin Oncol 26:3896-3902, 2008 33. Naeim A, Dy SM, Lorenz KA, et al: Evidence-based recommendations for cancer nausea and vomiting. J Clin Oncol 26:3903-3910, 2008 34. Cleeland CS, Gonin R, Hatfield AK, et al: Pain and its treatment in outpatients with metastatic cancer. N Engl J Med 330:592-596, 1994 35. Kirou-Marou AM, Hird A, Wong J, et al: Has pain management in cancer patients with bone metastases improved? A seven-year review at an outpatient palliative radiotherapy clinic. J Pain Symptom Manage [Epub ahead of print on May 24, 2008] 36. van den Beuken-van den Everdingen MH, de Rijke JM, Kessels AG, et al: High prevalence of pain in patients with cancer in a large population-based study in The Netherlands. Pain 132:312-320, 2007 37. Vallano A, Malouf J, Payrulet P, et al: Catalan research group for the study of pain in hospitals: Analgesic use and pain in the hospital settings. Eur J Clin Pharmacol 63:619-626, 2007 38. Okuyama T, Wang XS, Akechi T, et al: Adequacy of cancer pain management in a Japanese Cancer Hospital. Jpn J Clin Oncol 34:37-42, 2004 39. Johnson VM, Teno JM, Bourbonniere M, et al: Palliative care needs of cancer patients in U.S. nursing homes. J Palliat Med 8:273-279, 2005 40. Bone RC. Lemonade: The last refreshing taste. JAMA 276:1216, 1996

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Acknowledgment I thank my mentors, Steven Asch, Joanne Lynn, Paul Shekelle, and Lisa Rubenstein, who provided examples of quality in their passion for improvement. Dr Lorenz is supported by an HSR&D Career Development Award of the US Department of Veterans Affairs.

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