VOLUME

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JOURNAL OF CLINICAL ONCOLOGY

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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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Downloaded from jco.ascopubs.org on December 4, 2010. For personal use only. No other uses without permission. Copyright © 2008 American Society of Clinical Oncology. All rights reserved.

where the research evidence for clinical intervention is relatively robust. Let us put aside all our shibboleths and put our focus on quality. and illustrate an approach to promoting quality that could be used more widely. 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. In the future. Several authors highlight the use of decedent family surveys to access information about late life cancer care. All of these efforts use metrics developed with close clinician involvement. media reports remind us that cancer affects even the wealthiest. Current practices certainly do not guarantee what many of us would hope for in the quality of supportive cancer management. Maybe none of these things are needed. Copyright © 2008 American Society of Clinical Oncology.29 ASSIST provides a robust set of metrics for comprehensively evaluating the current state of supportive cancer care. and the measures that they collect are extremely simple. and battle to achieve better living with cancer. 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. and palliative settings. but we physicians who care for patients must learn to do it.26 this effort attempts to develop better patient-reported measures of pain. Investigators undertook a project to describe a set of standards for supportive cancer care that apply to primary care. as described by Kaasa et al. depression.20. To turn the abused and often misleading metaphor on its head. empathy should motivate politicians and other public figures.”40 Empathy is certainly one of the most powerful motivations to action. and the National Cancer Institute. the following authors or their immediate family members indicated a financial interest. and that should be managed in oncology practices. and is supporting routine palliative data collection through the Palliative Care Outcomes Collaborative. pain. Miyashita et al19 describe postbereavement surveys and other innovative tools that are being used to capture information about supportive cancer care. Even in the case of cancer pain. depression. Finlay et al18 found that palliative consultation was associated with family reports of greater satisfaction among the families of cancer patients. Australia raised the profile for cancer by establishing Cancer Australia. As I approach a patient. I then ask if I can discuss my thoughts and feelings about how I deal with it and about the peace I have found. Perhaps we should pay oncology practices for better pain management. where they are publicly reported. the Veterans’ Administration is supporting a stand-alone data collection center as well as routine record review using nationally available electronic medical records. wrote extensively of his experience living with and dying of metastatic renal cell carcinoma. and when monitoring is accompanied by resources to facilitate demonstrable improvements in care. No other uses without permission. and nausea and vomiting. the late physician. most famous. oncology. whatever its outcome. This relatively neglected aspect of medical care is not easy. . AUTHOR’S DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST Although all authors completed the disclosure declaration. In a series of essays that resonated with me personally (and no doubt many others). With regard to improving feasibility. and cachexia.30-33 Clinicians will support the monitoring of their performance when standards make clinical sense. to expect and demand that we do a better job in supportive cancer care. The Canadian province of Nova Scotia has been pioneering a range of quality measures including those that address supportive care.35-39 Perhaps we should modify the so-called pain as the fifth vital sign.24 European investigators are improving the tools for describing care in clinical settings. Jacobson et al17 document significant variation in supportive care. and there has been a strong focus for more than a decade on deficiencies in practice. as illustrated using several cases in this issue. Similar measures have been adopted and are being modified for use in Canada. QOPI is expanding a Web-based 3822 © 2008 by American Society of Clinical Oncology platform.Karl A. or resource allocation—to promote quality improvement. it is hoped that we will achieve a greater assurance about the quality of supportive cancer care. All rights reserved. This analysis suggests trends of increasing intensity in late life care. and Australian providers report their results on paper but have access to technical support. Roger Bone. and our patients. and learn to practice with quality of care in mind ourselves. For personal use only. “At least once a week I make special rounds on my institution’s chemotherapy or radiotherapy unit. we need to stop battling against cancer. None of them yet have fully developed feedback loops to influence rational service development—in the policy and funding stream.27 As part of that effort. I introduce myself as a physician with a probably terminal illness. 2010.ascopubs. even in a highly motivated group of oncology practices.16 QOPI’s efforts encompass supportive care as well as other aspects of cancer delivery.org on December 4. and influential among us.25 Similar to the Patient Reported Outcomes Measurement Information System project in the United States. require our politicians to deliver the changes to achieve it. and these reports provide a clinical description of the standards for communication. are feasible to implement. Concern about excessive utilization in advanced cancer care is likely to grow due to increasing resource constraints as well as demographic changes. No conflict exists for drugs or devices used in a study if they are not being JOURNAL OF CLINICAL ONCOLOGY Downloaded from jco. and that variation in reports of decedent care suggests approaches for improvement. us as providers. Agency for Healthcare Research and Quality. Earle et al23 offer insights based on highly feasible administrative monitors of late life utilization. The context for implementing quality measurement is critical. nurses. and a focus on achieving evidence-based standards for supportive cancer care might lead to unexpected innovation. Because of cancer’s profound impact. Perhaps we should institute measures to routinely detect depression when pain is present. In Japan. I myself have found peace after these encounters. Lorenz reported measures to promote quality improvement in oncology. This innovative Australian model illustrates how routine data can inform aspects of cancer delivery. which warrant further investigation. Grunefeld et al28 investigated the limitations of current measures for evaluating communication in clinical settings and for monitoring quality.21 Currow et al22 describe feasibility and outcomes of routine data collection in community palliative providers under challenging resource and data management limitations. and social workers. such as hospice services.34 unfortunately we still cannot reliably assure our patients nor their family members that they will receive excellent pain management. Perhaps we should strengthen multidisciplinary professional training for physicians. clinical governance. along with tools for routine symptoms reporting to inform clinical trials and potentially clinical care. 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. Almost daily.

qualityforum. Bourbonniere M. Jacobson JO. Okuyama T. 2008 34. and Lisa Rubenstein. www. Kirou-Marou AM. et al: Catalan research group for the study of pain in hospitals: Analgesic use and pain in the hospital settings. Cancer Care Ontario Cancer System Quality Index: http://www. Joanne Lynn. Naeim A. et al: Symptom assessment in palliative care: A need for international collaboration.health. 1980 13. Dy SM. Int J Palliat Nurs 7:501-504.on. National Committee for Quality Assurance: Clinician-level measures project. Amgen Expert Testimony: None Other Remuneration: None REFERENCES 1. http://www. 2006 11. Naeim A.org © 2008 by American Society of Clinical Oncology 3823 Downloaded from jco. 2005 5. World Health Organization: WHO Cancer Palliative Care. Dy SM. Koroukian SM. J Palliat Med 8:273-279.ascopubs. Pantilat SZ. M: New standards and implications for improving the quality of supportive oncology practice. http://www. J Pain Symptom Manage (in press) 30. et al: Association between critical care physician management and patient mortality in the intensive care unit.org/projects/ongoing/cancer/index. Employment or Leadership Position: None Consultant or Advisory Role: None Stock Ownership: None Honoraria: None Research Funding: Karl A. et al: Improvement in oncology practice performance through voluntary participation in the Quality Oncology Practice Initiative. Lethbridge L.ca/english/home/ocs/qpi/csqi/ 25. Seow H. van den Beuken-van den Everdingen MH. Dy SM. Souza JM. Aoun S. Steven Asch. and dyspnea. 1996 ■ ■ ■ Acknowledgment I thank my mentors. et al: Pain and its treatment in outpatients with metastatic cancer. Dy SM. Health Administration Press. et al: Mapping levels of palliative care development: A global view. 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 24. Hunt P: Supportive and palliative care networks: A new model for integrated care. 2008 8. Dr Lorenz is supported by an HSR&D Career Development Award of the US Department of Veterans Affairs. Lemonade: The last refreshing taste. 2008 33. J Clin Oncol 26:1893-1898. 2008] 36. et al: Evidence-based recommendations for information and care planning in cancer care. Wong J. Dy SM. 2008 7. http://www. Cancer Australia. Lynch T. Walling AM.aspx 15. Lynn J. Casarett D: Nationwide Veterans Affairs quality measure for cancer: The Family Assessment of Treatment at End of Life. Pain 132:312-320.gov. J Clin Oncol 26:3824-3831.ncqa. J Clin Oncol 21:1133-1138. Landrum MB. please refer to the Author Disclosure Declaration and the Disclosures of Potential Conflicts of Interest section in Information for Contributors. Lai B. Travis S. et al: Towards using administrative databases to measure population-based indicators of quality of end-of-life care: Testing the methodology. et al: Evidence for improving palliative care at the end of life: A systematic review. Teno JM. 1994 35. For a detailed description of the disclosure categories. 2006 6. who provided examples of quality in their passion for improvement.S. Wood J. Dewar R. Grunfeld E. 2008 10. All rights reserved. 2006 28.nihpromis. Hird A. anorexia. Grunfeld E. et al: Identifying potential indicators of the quality of end-of-life cancer care from administrative data. Lorenz KA. Health Care Financ Rev 28:65-80. Gonin R. Earle CC. 2007 38. Lorenz KA.asp 3. Loge JH. Paul Shekelle. 2008 16.aspx 12.au/ palliativecare 22. JAMA 276:1216.org/default. 2008 29. McNiff KK. Lorenz. et al: Quality Measures for Supportive Cancer Care: The Cancer Quality-ASSIST (Assessing Symptoms. J Clin Oncol 26:3845-3852. nursing homes. Kralovec PD. Ann Intern Med 148:147-159.asp 27. Johnson VM. Arch Intern Med 166:227-230. 2008 19. Moroney-Galin C. 2004 39. et al: Evidence-based recommendations for cancer nausea and vomiting.asco.Overview evaluated as part of the investigation. et al: High prevalence of pain in patients with cancer in a large population-based study in The Netherlands. 2005 40. et al: Evidence-based standards for cancer pain management. et al: Isolation of health services research from practice and policy: The example of chronic heart failure management. 2008 32. Madigan E. Payrulet P. et al: Evidence-based recommendations for cancer fatigue. and Indicators of Supportive Treatment) Project.edu/CMS/ 8089. Shreve S. et al: Adequacy of cancer pain management in a Japanese Cancer Hospital. J Pain Symptom Manage [Epub ahead of print on May 24. Lorenz KA. or for more information about ASCO’s conflict of interest policy. Hatfield AK. Koccywas. 2008 23.int/cancer/palliative/en 9. depression. 2008 18. Kessels AG. Miyashita M. J Am Geriatr Soc 54:535-540.iom. 2001 2. et al: The growth of palliative care programs in United States hospitals. et al: Evaluating the California Hospital Initiative in Palliative Services. Levy MM. Finlay F. Ann Arbor. Wright M. Cleeland CS. For personal use only. Lorenz KA. N Engl J Med 330:592-596. et al: Palliative care needs of cancer patients in U. Lorenz K. Morrison RS. Citko J. A: Explorations in Quality Assessment and Monitoring. J Clin Oncol 26:3903-3910. Side Effects. et al: Aggressiveness of cancer care near the end of life: Is it a quality-of-care issue? J Clin Oncol 26:3860-3866. Institute of Medicine: Definition of quality. National Quality Forum: Quality of Cancer Care Performance Measures Project. 2007 37. Wang XS.gov. Jpn J Clin Oncol 34:37-42. Copyright © 2008 American Society of Clinical Oncology. Naeim A. Eagar K. Paice J. 2008 31. Kaasa S. Rapoport J. 56bbfed7341ace64e7cba5b4320041a0 / ?vgnextoid 31f0dd224254c010VgnVCM100000ed730ad1RCRD&ID ILC-VU-GENERAL& attr qopi 17. J Clin Oncol 26:3879-3885. et al: Has pain management in cancer patients with bone metastases improved? A seven-year review at an outpatient palliative radiotherapy clinic. Vallano A.cancercare . Volume I: The Definition of Quality and Approaches to Its Assessment. Beaird H. Palliative Care outcomes collaborative. Naeim A.jco. Fayers P. Hirai K: Evaluation of end-of-life cancer care from the perspective of bereaved family members: The Japanese experience. Eur J Clin Pharmacol 63:619-626. J Clin Oncol 26:3896-3902. J Clin Oncol 26:3867-3873. The Quality Oncology Practice Initiative: http://www. http://www. de Rijke JM. Malouf J. J Clin Oncol 26:3838-3844. http://www. Morita T. 2003 14. 2010.org on December 4. .canceraustralia. Ann Intern Med 148:801-809. Neuss MN. Bone RC. MI. Rabow MW. Palliat Med 20:769-777.org/portal/ site / ASCO / menuitem . Earle CC. No other uses without permission. Akechi T. J Clin Oncol 26:3886-3895. Donabedian. et al: End-of-life expenditures by Ohio Medicaid beneficiaries dying of cancer. 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. J Pain Symptom Manage 35:469-485. 2006 4. Phillips CO. Lemeshow S. Dy SM. http://www.who. Ferrell B. Lorenz KA. Rich MW. Currow DC.au/ 21. Park ER. Folkes A.org/tabid/745/Default. 2008 26. 2008 20. J Palliat Med 8:1127-1134. Patient Reported Outcomes Measurement Information System (PROMIS): http://www.