Testing a way to help patients with dementia and their caregivers set goals for care / David B. Reuben [and three others].

Format:

Book

Author/Creator:

Reuben, David B., author.

Language:

English

Subjects (All):

Nursing care plans.

Physical Description:

1 online resource (81 pages) : illustrations

Place of Publication:

Washington, DC : Patient-Centered Outcomes Research Institute (PCORI), 2019.

Summary:

BACKGROUND: Health outcome measures for chronic diseases have focused on survival, condition-specific indicators, and general health-related quality of life. These measures do not assess success or failure in meeting patient-centered goals. Goal-attainment scaling (GAS) focuses on a patient's individual health goals and how well these goals are being met. OBJECTIVES: Our research aimed to (1) develop a standard set of goals for patients with dementia and their caregivers; (2) develop a methodology to revise goals when the clinical or social situation changes; and (3) integrate goal setting and attainment into clinical care. METHODS: We recruited patients with dementia and their caregivers from the University of California Los Angeles Alzheimer's and Dementia Care program. The study had 3 phases. In phase 1, we conducted focus groups with 7 patients with early dementia and 36 caregivers to produce an inventory of goals for dementia care. In phase 2, we pilot tested this inventory in a sample of 6 patients with dementia and 26 caregivers to determine feasibility and refine the goals. In phase 3, we studied 101 patient/family caregiver pairs over a period of 6 to 12 months to assess the importance and difficulty of achieving different goals and estimate how often goals were attained. At 6 months, we asked participants whether their goals remained the same, whether they wanted to rescale the responses of their goals, or whether they wanted to create new goals. We also elicited caregiver perceptions of how valuable this process was and whether it captured something different from usual medical care. PATIENT AND CAREGIVER OUTCOMES: The final inventory resulting from the 3 phases identified 53 goals for dementia care that fit within 5 domains (medical care, physical quality of life, social and emotional quality of life, goals for accessing services and support, and caregiver support goals). The vast majority of goals (87%) were nonmedical. Caregiver support goals were most commonly selected (34%). Goals related to patient physical (30%) and social/emotional (16%) aspects of life were the next most commonly selected. With the help of nurse practitioner dementia care managers (DCMs), caregivers and patients were able to operationalize these goals for clinical use. The majority (60% at 6 months and 72% at 12 months) of participants felt it was not difficult to rate and rank the importance of goals. Patient- and caregiver-identified goals were integrated into the clinical care of 101 patients; 96% felt the goals they set were meaningful; and 79% felt the process captured something different from usual medical care. At 6 and 12 months, 75% and 74% of participants, respectively, had attained the goals they had set. CONCLUSIONS: The study demonstrated patients with dementia and their caregivers can establish patient-centered goals that can be operationalized, worked toward, and measured. Further research is needed to integrate this approach into routine clinical care and adapt it to other conditions. LIMITATIONS: This research was limited to a single site and a single condition, dementia. Because relatively few participants changed their goals, inferences about new goals is limited.

Contents:

Background

Participation of Patients and other Stakeholders in the Design and Conduct of Research and Dissemination of Findings

Methods Overview

Phase 1. Qualitative Study to Develop a Standard Set of Goals for Patients with Dementia and their Caregivers

Phase 2. Pilot Study to Determine Feasibility and Develop a Methodology to Revise Goals when the Clinical or Social Situation Changes

Phase 3. Longitudinal Pilot Study of Patient-Caregiver Dyads Testing the Feasibility of Integrating Goal Setting and Attainment into Clinical Care

Discussion

Conclusions

References

Acknowledgment

Appendices.

Notes:

Description based on publisher supplied metadata and other sources.