Results Summary

What was the research about?

Dementia is a health problem that can cause memory loss, trouble doing daily tasks, and behavioral problems. Sometimes patients with dementia and their caregivers have goals for patients that their usual medical care doesn’t include. For example, caregivers may want to maintain patients’ social activities in the community. They may also want patients to continue to live at home.

The research team wanted to test a process called Goal Attainment Scaling, or GAS, to see if patients and their caregivers could identify, set, and meet goals that were important to them. The team also wanted to see if GAS was valuable to patients and their caregivers.

What were the results?

Patients and their caregivers were able to use GAS to set goals that mattered most to them. Most goals were not medical. The goals focused on patient quality of life as well as caregiver health and well-being. When surveyed at 6 and 12 months, 75 percent of patients and caregivers said that they met the goals they set, and 96 percent said that the goals were meaningful. Further, 80 percent of patients and caregivers said that GAS captured something different from goals set by usual medical care.

Who was in the study?

The main part of the study included 101 pairs of patients with dementia and their caregivers. The research team recruited these pairs from a dementia care program in Los Angeles.

Of the patients, 60 percent were white, 19 percent were black, and 6 percent were other races; 15 percent were Hispanic. The average patient age was 83. On average, patients had a moderate level of dementia. Patients with moderate dementia have increased confusion and more memory loss than earlier stages of the health problem.

Among caregivers, 57 percent were the patient’s child, and 32 percent were the patient’s spouse. Also, 70 percent lived with the patient. The average caregiver age was 62.

What did the research team do?

To develop the GAS process, the research team first interviewed 7 patients and 36 caregivers about what types of goals were most important. Then they created a list of goals from all the groups. To test GAS, the team had 6 patients and 26 caregivers choose important personal goals from the list or add new goals.

In the main part of the study, the team tested GAS in a dementia care program. In this part, 101 patient-caregiver pairs chose goals they felt were most important. Then, they worked with care managers to incorporate those goals into patients’ care. The team talked to patients and caregivers 6 months and 12 months later to see if

  • They had met their goals
  • They thought the goals were meaningful
  • The goals they had set with GAS were different from goals set previously during usual medical care

What were the limits of the study?

The research team tested GAS in only one dementia care program in Los Angeles. The team doesn’t know if GAS will work in other places. Most patients in the study had dementia that was too severe to let them set goals for themselves, so caregivers set most of the goals. The results might be different for patients with milder dementia who are more able to take part.

Future research could see if other settings providing dementia care can use GAS to set and meet goals. Research could also test GAS with other types of clinicians, such as social workers and community health coaches. Finally, researchers could see how GAS works for patients with milder dementia or for patients with other long-term health problems.

How can people use the results?

Dementia care centers can offer the GAS process to work with patients and their caregivers so that care can help them meet the goals that matter most to them.

Final Research Report

View this project's final research report.

More About This Research

Peer-Review Summary

Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also assesses how the project addressed PCORI’s Methodology Standards. During peer review, experts read a draft report of the research and provide comments about the report. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. These reviewers cannot have conflicts of interest with the study.

The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve descriptions of the conduct of the study or to clarify the connection between results and conclusions. Sometimes, awardees revise their draft reports twice or more to address all of the reviewers’ comments. 

Peer reviewers commented and the researchers made changes or provided responses. Those comments and responses included the following:

  • Reviewers asked for additional justification for the newly developed measurement scale that researchers tested in this study. The researchers explained that the goal attainment scaling approach allowed for more-personalized goals, which suited the study’s purposes better than a more generic quality of life measure. The researchers also added examples of this measure in clinical care.
  • Reviewers were unclear about why the study measured goal attainment using three different techniques, rather than comparing queuing and itemizing techniques more directly. The researchers said that they believed that the different ways of measuring goal attainment would affect a person’s attainment ratings. The researchers also stated that they wanted to explore different approaches to measuring goal attainment for their final analyses.
  • Reviewers expressed concern about the multiple analyses that researchers conducted in this study without correcting for multiple hypothesis testing. The researchers explained that all of the subgroup analyses should be considered exploratory and hypothesis generating. They also added a Bonferroni correction so that the threshold for statistical significance would be more conservative.

Conflict of Interest Disclosures

View the COI disclosure form.

Peer-Review Summary

Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also assesses how the project addressed PCORI’s Methodology Standards. During peer review, experts read a draft report of the research and provide comments about the report. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. These reviewers cannot have conflicts of interest with the study.

The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve descriptions of the conduct of the study or to clarify the connection between results and conclusions. Sometimes, awardees revise their draft reports twice or more to address all of the reviewers’ comments. 

Peer reviewers commented and the researchers made changes or provided responses. Those comments and responses included the following:

  • Reviewers asked for additional justification for the newly developed measurement scale that researchers tested in this study. The researchers explained that the goal attainment scaling approach allowed for more-personalized goals, which suited the study’s purposes better than a more generic quality of life measure. The researchers also added examples of this measure in clinical care.
  • Reviewers were unclear about why the study measured goal attainment using three different techniques, rather than comparing queuing and itemizing techniques more directly. The researchers said that they believed that the different ways of measuring goal attainment would affect a person’s attainment ratings. The researchers also stated that they wanted to explore different approaches to measuring goal attainment for their final analyses.
  • Reviewers expressed concern about the multiple analyses that researchers conducted in this study without correcting for multiple hypothesis testing. The researchers explained that all of the subgroup analyses should be considered exploratory and hypothesis generating. They also added a Bonferroni correction so that the threshold for statistical significance would be more conservative.

Conflict of Interest Disclosures

Project Information

David B. Reuben, MD
University at California, Los Angeles
$1,102,232
10.25302/10.2019.ME.13035845
Developing Patient-Centered Outcomes for Dementia: Goal Setting and Attainment

Key Dates

September 2013
September 2018
2013
2018

Study Registration Information

Tags

Has Results
Project Status
Award Type
Health Conditions

Health Conditions

These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them.

View Glossary
Funding Opportunity Type
Research Priority Area
State

State

The state where the project originates, or where the primary institution or organization is located.

View Glossary
Last updated: October 20, 2021