Performance Measurement Accelerating Improvement (2006) / Chapter Skim
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Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn
Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn
Pages 287-321
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. Few palliative care performance measures are included in population-based assessments of quality such as the National Healthcare Quality Report, or even in quality reports focused upon settings with high proportions of palliative care patients, such as nursing homes.
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288 APPENDIX J prominent in any national set of quality measures, since such a high proportion of care occurs in patients with life-threatening illness and since deficiencies in quality may cause particular harm in patients with little time or reserve remaining to recover from adverse effects. A national measurement set must consider the unique priorities and challenges of palliative care patients, as many measures associated with improved outcomes in a healthy population may be inappropriate or even harmful in patients with serious illness and limited prognoses.
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APPENDIX J 289 for palliative care, relevant reports from the Institute of Medicine (Lunney et al., 2003; Teno et al., 2001) , and other pertinent books and reports.
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290 APPENDIX J TABLE J-1 Selected Potential Performance Measures for Palliative/ End-of-Life Care Domain Category Numerator Name of Measure Description Denominator Pain Assessment Pain measurement Chart review Numerator: Patients who had any pain measureUHC ment within 48 hours of admission Denominator: Palliative care population hospital admissions Use of numeric pain Chart review Numerator: Patients who had a numeric pain scale scale used UHC, Brown-QIO, Denominator: Palliative care or other population VHA-QIO admissions with a pain score within 48 hours Pain as 5th vital sign Across all settings Numerator: Patients who had pain assessed VHA-QIO Chart review when other vital signs taken Denominator: All patients (unless lesser frequency indicated and documented in chart) Appropriate pain Assessment of Numerator: Patients with appropriate pain assessment pain intensity, assessment Brown-QIO 4 other elements Denominator: All NH residents with pain Treatment Pain medication Any pain Numerator: Any pain medication prescribed prescribed medication Denominator: All NH residents with pain Brown-QIO Nonpharmacological Any nonpharma- Numerator: Nonpharmacological treatment treatment cological treatment Denominator: All NH residents with pain Brown-QIO in plan of care Change in pain Change in pain Numerator: Change in pain medication medication medication for Denominator: NH residents with daily pain Brown-QIO uncontrolled pain and documented moderate-severe pain
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APPENDIX J 291 Psychometric Testing (Validity/ Reliability) Prior Use References N Benchmarking Multiple settings N Benchmarking Baier et al., 2004; Cleeland et al., 2003 N Improvement Cleeland et al., 2003 Y -- e.g., Brief Pain Improvement Baier et al., 2004; Inventory Lorenz et al., 2004 N Improvement Baier et al., 2004 N Improvement Baier et al., 2004 N Improvement Baier et al., 2004 (continued on next page)
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292 APPENDIX J TABLE J-1 continued Domain Category Numerator Name of Measure Description Denominator Adherence to guide- Adherence to Numerator: Adherence lines "best practice" Denominator: Community oncology patients Du Pen pain guidelines, with pain of 3 or greater on 10-point scale defined as score of 2.5 on score of 03 Outcome Rate of pain % of patients with Numerator: % of patients with moderate or VHA-IHI moderate-severe severe pain pain; various settings Denominator: All patients in setting Patient perspective Rate of pain in % of patients with Numerator: % of patients with moderate or nursing homes moderate-severe severe pain over 7-day lookback period Brown Atlas pain; Collected from Denominator: All nursing home patients Minimum Data Set (MDS) Persistent pain in % of nursing home Numerator: patients who still have moderate nursing homes patients with or excruciating pain on 2nd assessment Brown Atlas persistent pain 60180 days after admission Denominator: Nursing home patients with pain on 1st assessment.
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APPENDIX J 293 Psychometric Testing (Validity/ Reliability) Prior Use References N Improvement.
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294 APPENDIX J TABLE J-1 continued Domain Category Numerator Name of Measure Description Denominator Dyspnea Assessment Dyspnea assessment Dyspnea assessment Numerator: Patients assessed for dyspnea UHC within 24 hours of within 24 hours of admission admission Denominator: Palliative care population Hospital admissions Chart review Outcome Dyspnea relieved/ Dyspnea relieved/ Numerator: Patients with dyspnea reduced/ reduced reduced within 48 relieved to 3 within 48 hours of admission UHC hours of admission Denominator: Patients with documented Hospital dyspnea Chart review Constipation Treatment Bowel regimen Bowel regimen Numerator: Patients with bowel regimen UHC within 24 hours ordered within 24 hours or bowel regimen of opioid contraindicated administration Denominator: Palliative care population Hospital admissions started on opioids Chart review Emotional and cognitive symptoms Assessment Depression and Screening for Numerator: Patient asked about or treated for comorbid disease depression with depression or referred to mental health ACOVE Depression new onset of professional within 2 months of diagnosis of serious comorbid condition conditions Denominator: Vulnerable elders who present Community with new onset of serious comorbid conditions, including malignancy Treatment Recognizing depression Evaluation/treat- Numerator: Patient asked about or treated for ACOVE Depression ment for depression depression or referred to mental health pro if presents with fessional within 2 weeks of presentation depressive Denominator: Vulnerable elders who present symptoms with new onset of symptoms of potential Community depression
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APPENDIX J 295 Psychometric Testing (Validity/ Reliability) Prior Use References N N N Tested in managed care Benchmarking Nakajima and Wenger, 2003 organizations as part of ACOVE measurement set Nakajima and Wenger, 2003 (continued on next page)
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296 APPENDIX J TABLE J-1 continued Domain Category Numerator Name of Measure Description Denominator Care planning Process Documentation of Documentation of Numerator: Patients with all 4 aspects docupatient status all 4 aspects of mented within 48 hours UHC patient status with- Denominator: Palliative care admissions in 48 hours of admission: prog nosis, functional status, psychosocial symptoms, symptom distress Patient/family Patient/family meet- Numerator: Patients with patient/family meeting meeting ing within 1 week of documented within 1 week of admission UHC admission. Defined Denominator: Palliative care admissions as documented dis cussion of patient preferences/plans for discharge disposition Hospital Chart review Discharge planning Plan for discharge Numerator: Patients with discharge disposition UHC disposition docu- documented within 4 days of admission mented within 4 Denominator: Palliative care population days of admission admissions Hospital Chart review Use of discharge Discharge planner/ Numerator: Patients where discharge planner/ planner social services social services arranged services required for UHC arranged services discharge required for Denominator: Palliative care population discharge admissions Hospital Chart review Advance directives Surrogate decision- Numerator: Outpatient chart includes: and surrogates -- maker should be (1)
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APPENDIX J 297 Psychometric Testing (Validity/ Reliability) Prior Use References Prognosis was least frequently documented, followed by functional status and psychosocial symptoms N Benchmarking N Benchmarking Benchmarking The ACOVE indicators Research Wenger et al., 2003 have been tested in managed care settings; further research is addressing quality improvement (continued on next page)
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298 APPENDIX J TABLE J-1 continued Domain Category Numerator Name of Measure Description Denominator Advance directives Advance directives Numerator: Same as above, except docuand surrogates in hospital chart mentation in hospital medical record within hospital for patients ad- 48 hours of admission ACOVE EOL mitted with demen- Denominator: Vulnerable elders admitted to tia, coma, or altered hospital with dementia, coma, or altered mental status mental status, who survive 48 hours Chart review Hospital Documentation of Documentation of Numerator: Within 48 hours of admission, care preferences -- preferences for medical record documents that patient's prior dementia patients hospita- preferences for care either have been considered ACOVE EOL lized with severe or could not be elicited or are unknown dementia Denominator: Vulnerable elders with severe Chart review dementia admitted to the hospital and surviv Hospital ing 48 hours Site of death % of patients who Numerator/Denominator: All persons 15 died where death years of age or older who died of any non occurred in (1) home; traumatic or external cause in a state.a (2)
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APPENDIX J 299 Psychometric Testing (Validity/ Reliability) Prior Use References Research Wenger et al., 2003 Research Wenger et al., 2003 Y Benchmarking Teno 2004 Improvement N Benchmarking Connor et al., 2003 (continued on next page)
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300 APPENDIX J TABLE J-1 continued Domain Category Numerator Name of Measure Description Denominator Satisfaction After-death bereaved 3 versions: hospice, Numerators: Family members who reported that: family interview hospital, and nurs- (1) overall assessment of quality was excellent; ing home.
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APPENDIX J 301 Psychometric Testing (Validity/ Reliability) Prior Use References Y (Teno et al., 2001)
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302 APPENDIX J decedents older than 15 years of age, as well as data on a number of measures in nursing homes, including 12 measures for pain, advance directive use, do not resuscitate orders, and feeding tubes. Several of these are summarized in Table J-1.
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Wenger et al. reported applying the indicators to measure quality in two managed care organizations, and ongoing research involves testing interventions to determine whether they improve performance.
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and the United Hospital Fund's Palliative Care Quality Improvement Initative. The measures developed in quality improvement work generally have face validity and the test of usefulness inherent in that work, but they have not often had formal testing of reliability and validity.
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Intensive Care The Robert Wood Johnson Foundation Critical Care End-of-Life Peer Workgroup (Clarke et al., 2003) has developed a set of 7 proposed end-oflife quality domains and 53 quality indicators, as well as a set of clinician and organizational interventions and behaviors that might address these indicators in the intensive care unit.
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, Agency for Healthcare Research and Quality (AHRQ) , and CMS; Palliative Care, funded by the Robert Wood Johnson Foundation; and Long-Term Care.
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MEASUREMENT RECOMMENDATIONS Areas with Measures That Are Ready for Implementation Our criteria for choosing measures included evidence for reliability, validity, association with outcomes, ability to be improved in research studies or quality improvement, feasibility, and applicability across health care settings and across possible definitions of palliative care. We propose measures in the two domains that others have also often proposed as being nearly ready for implementation: care planning and pain management.
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Observational reports from quality improvement projects demonstrate remarkable improvements in the rate of documented care planning and show care delivery being in accord with the plan (Hammes and Rooney, 1998; Lynn et al., 2000)
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Improving pain management also requires numerous steps. Again, a recent systematic review found little high-quality evidence that pain can be improved on a population level, although quality improvement collaboratives (Baier et al., 2004; Cleeland et al., 2003; Lynn et al., 2000)
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310 APPENDIX J Further development should include evaluating which elements of assessment are most associated with outcomes; consensus on defining the denominator; and evaluating evidence of applicability across settings. In addition, since few information systems can currently provide this data, the number of medical records to be reviewed will need to be defined.
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APPENDIX J 311 ening, summarizing into a small number of key dimensions, demonstration of broad applicability (region, type of illness, approach to care services, ethnic background) , and demonstration that scores improve when processes of care improve (Teno et al., 2001; Teno, 2004)
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312 APPENDIX J The domain of grief and bereavement also has many available measurement instruments (Lorenz et al., 2004) , but little is available to guide performance measurement.
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. CHALLENGES TO APPLYING THESE MEASURES FOR THE PURPOSES OF QUALITY IMPROVEMENT, PAY FOR PERFORMANCE, AND PUBLIC REPORTING Challenges of Outcomes in Palliative Care Two major challenges to using outcome measures in palliative and endof-life care are validity and adjustment for patient characteristics and preferences.
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314 APPENDIX J laudable objective. Site-of-death information can generally be reliably obtained from death certificate or Medicare data.
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Quality improvement work has tended to use either an arbitrary category that combines service utilization with diagnosis (e.g., all cancer patients seen in our clinic, or all heart failure patients admitted to the hospital) or the "surprise question," which requires asking a clinician who knows the patient whether the patient is sick enough that it would be no surprise for the patient to die within 6 months or a year.
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316 APPENDIX J considered to be "terminally ill" (MDS) ; patients currently receiving hospice care; and patients where a provider states that they would not be surprised if the patient died within the next year.
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Within a year, the NQF could probably field measures of physical pain and advance care planning that would be good enough for comparing health care delivery systems as to the quality of care. With more deliberate development over just a few years, life closure, caregiver experience, and some other symptoms (depression, dyspnea, chemotherapy-associated nausea and vomiting, for example)
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2003. Robert Wood Johnson Foundation Critical Care End-of-Life Peer Workgroup Members.
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2004. Clinical Practice Guidelines for Quality Palliative Care.
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2004. Pitfalls of converting practice guidelines into quality measures: Lessons learned from a VA performance measure.
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APPENDIX J 321 LIST OF ABBREVIATIONS ACOVE Assessing Care of Vulnerable Elders CMS Center for Medicare and Medicaid Services EOL end of life ICU intensive care unit IHI Institute for Healthcare Improvement LOS length of stay MDS Minimum Data Set (CMS) NDS National Discharge Sample (NHPCO)
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