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Developing patient-centered outcomes for dementia: goal setting and attainment
Investigator (PI): Reuben, David B
Performing Organization (PO): (Current): University of California, Los Angeles, UCLA Health, David Geffen School of Medicine, Department of Medicine, Division of Geriatrics / (310) 312-0531
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2013
Final Year: 2018
Record Source/Award ID: PCORI/ME-1303-5845
Funding: Total Award Amount: $1,102,231
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: Background: Health outcomes for chronic diseases have, to date, failed to incorporate patient-centeredness. They have focused on outcomes for specific conditions (e.g., disease control), as well as mortality and general measures of quality of life rather than reflecting individual patient goals or preferences. Dementia is a disorder where existing outcome measures have little meaning and new measures are needed to capture the success or failure in meeting patient-centered goals. Goal attainment scaling (GAS) focuses on a patient's individual health goals within or across a variety of dimensions (e.g., symptoms, social and role functions) and determines how well these goals are being met. However, GAS has been inadequately developed and validated. Objectives: The proposed research will 1) further develop GAS for dementia by partnering with patients and their families to develop a standardized set of goals, assign patient/family-determined importance to these goals, and compare this approach to other clinical outcome measures; and 2) develop a methodology to re-examine and revise goals when the clinical or social situation changes, thus permitting a more precise measurement of evolving goals. Methods: This study takes advantage of an existing CMS Innovation Challenges Award that provides comprehensive care for patients with dementia and their caregivers. The UCLA Alzheimer's and Dementia Care program will serve 1000 patients who are in various stages of the disorder and their families over the next three years; over 170 have already been enrolled. The research will follow three phases. In phase 1, we will assemble five groups of patients with early dementia and caregivers to identify a list of goals that are important and also help determine the best way to assess whether they are being met and the value placed on meeting each goal. In phase 2, we will then pilot-test this inventory in a sample of 30 patients and families to determine feasibility and refine the approach. Finally, in phase 3, we will use this approach in 100 patients/family caregivers over a period of one year to determine how well it captures perceived patient-oriented care compared to traditional outcomes and caregiver perceptions of overall care and outcomes. Patient outcomes (projected): The outcome will be a better goal-oriented approach for dementia to making health care decisions and assessing outcomes that frames the discussion in terms of individually desired health states. This will simplify decision making for patients with multiple conditions by focusing on outcomes that span conditions and aligning treatments toward common goals. Thus, patients can be in control when treatment options require trade-offs (e.g., better symptom control at the expense of potentially shorter life span). If successful, this approach could be adopted for other chronic incurable diseases.
MeSH Terms:
  • Alzheimer Disease /*therapy
  • California
  • Caregivers
  • Centers for Medicare and Medicaid Services, U.S.
  • Decision Making
  • Dementia /*therapy
  • Goals
  • Humans
  • Outcome Assessment, Health Care
  • * Patient-Centered Care
  • Quality of Life
  • United States
  • Universities
Country: United States
State: California
Zip Code: 90095
UI: 20143583
Project Status: Completed
Record History: ('2018: Project extended to 2018. 2017: Project extended to 2017.',)