Rebecca L Sudore1, Daren K Heyland2, Hillary D Lum3, Judith A C Rietjens4, Ida J Korfage4, Christine S Ritchie5, Laura C Hanson6, Diane E Meier7, Steven Z Pantilat8, Karl Lorenz9, Michelle Howard10, Michael J Green11, Jessica E Simon12, Mariko A Feuz13, John J You10. 1. Division of Geriatrics, Department of Medicine, University of California, San Francisco, California, USA; Veteran Affairs Medical Center, San Francisco, California, USA. Electronic address: Rebecca.sudore@ucsf.edu. 2. Department of Critical Care Medicine, Queen's University, Clinical Evaluation Research Unit, Kingston General Hospital, Ontario, Canada. 3. Veteran Affairs Eastern Colorado Geriatrics Research Education and Clinical Center (GRECC), Denver, Colorado, USA; Department of Geriatric Medicine, Department of Medicine, University of Colorado School of Medicine, Aurora, Colorado, USA. 4. Department of Public Health, Erasmus University Medical Center, Rotterdam, The Netherlands. 5. Division of Geriatrics, Department of Medicine, University of California, San Francisco, California, USA. 6. Division of Geriatric Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA. 7. Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, New York, USA. 8. Palliative Care Program, Division of Hospital Medicine, Department of Medicine, University of California, San Francisco, California, USA. 9. Veteran Affairs Medical Center, Palo Alto, California, USA; Stanford University, Palo Alto, California, USA. 10. Department of Medicine, McMaster University, Hamilton, Ontario, Canada; Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, Ontario, Canada. 11. Departments of Humanities and Medicine, Penn State College of Medicine, Hershey, Pennsylvania. 12. Departments of Oncology, Community Health Sciences and Medicine, University of Calgary, Calgary, Alberta, Canada. 13. Division of Geriatrics, Department of Medicine, University of California, San Francisco, California, USA; Veteran Affairs Medical Center, San Francisco, California, USA.
Abstract
CONTEXT: Standardized outcomes that define successful advance care planning (ACP) are lacking. OBJECTIVE: The objective of this study was to create an Organizing Framework of ACP outcome constructs and rate the importance of these outcomes. METHODS: This study convened a Delphi panel consisting of 52 multidisciplinary, international ACP experts including clinicians, researchers, and policy leaders from four countries. We conducted literature reviews and solicited attendee input from five international ACP conferences to identify initial ACP outcome constructs. In five Delphi rounds, we asked panelists to rate patient-centered outcomes on a seven-point "not-at-all" to "extremely important" scale. We calculated means and analyzed panelists' input to finalize an Organizing Framework and outcome rankings. RESULTS: Organizing Framework outcome domains included process (e.g., attitudes), actions (e.g., discussions), quality of care (e.g., satisfaction), and health care (e.g., utilization). The top five outcomes included 1) care consistent with goals, mean 6.71 (±SD 0.04); 2) surrogate designation, 6.55 (0.45); 3) surrogate documentation, 6.50 (0.11); 4) discussions with surrogates, 6.40 (0.19); and 5) documents and recorded wishes are accessible when needed 6.27 (0.11). Advance directive documentation was ranked 10th, 6.01 (0.21). Panelists raised caution about whether "care consistent with goals" can be reliably measured. CONCLUSION: A large, multidisciplinary Delphi panel developed an Organizing Framework and rated the importance of ACP outcome constructs. Top rated outcomes should be used to evaluate the success of ACP initiatives. More research is needed to create reliable and valid measurement tools for the highest rated outcomes, particularly "care consistent with goals." Published by Elsevier Inc.
CONTEXT: Standardized outcomes that define successful advance care planning (ACP) are lacking. OBJECTIVE: The objective of this study was to create an Organizing Framework of ACP outcome constructs and rate the importance of these outcomes. METHODS: This study convened a Delphi panel consisting of 52 multidisciplinary, international ACP experts including clinicians, researchers, and policy leaders from four countries. We conducted literature reviews and solicited attendee input from five international ACP conferences to identify initial ACP outcome constructs. In five Delphi rounds, we asked panelists to rate patient-centered outcomes on a seven-point "not-at-all" to "extremely important" scale. We calculated means and analyzed panelists' input to finalize an Organizing Framework and outcome rankings. RESULTS: Organizing Framework outcome domains included process (e.g., attitudes), actions (e.g., discussions), quality of care (e.g., satisfaction), and health care (e.g., utilization). The top five outcomes included 1) care consistent with goals, mean 6.71 (±SD 0.04); 2) surrogate designation, 6.55 (0.45); 3) surrogate documentation, 6.50 (0.11); 4) discussions with surrogates, 6.40 (0.19); and 5) documents and recorded wishes are accessible when needed 6.27 (0.11). Advance directive documentation was ranked 10th, 6.01 (0.21). Panelists raised caution about whether "care consistent with goals" can be reliably measured. CONCLUSION: A large, multidisciplinary Delphi panel developed an Organizing Framework and rated the importance of ACP outcome constructs. Top rated outcomes should be used to evaluate the success of ACP initiatives. More research is needed to create reliable and valid measurement tools for the highest rated outcomes, particularly "care consistent with goals." Published by Elsevier Inc.
Entities:
Keywords:
Advance care planning; Delphi technique; consensus; outcome measures
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