Focus Groups to Determine Surrogates Views Regarding Patient Preference Predictors
| Status: | Recruiting |
|---|---|
| Conditions: | Healthy Studies |
| Therapuetic Areas: | Other |
| Healthy: | No |
| Age Range: | 18 - 90 |
| Updated: | 4/6/2019 |
| Start Date: | September 10, 2016 |
| End Date: | December 31, 2019 |
| Contact: | David Wendler, Ph.D. |
| Email: | dwendler@mail.cc.nih.gov |
| Phone: | (301) 435-8726 |
Background:
Some people cannot make medical treatment decisions on their own. The people who make
decisions on their behalf are called medical surrogates. Sometimes surrogates cannot predict
which treatment course the person or their loved ones would have chosen. The surrogates often
become distressed because of making these decisions. Researchers think a tool called a
Patient Preference Predictor (PPP) may be able to make the process easier. The PPP would
predict what treatment the person would want. This is based on treatment preferences of
similar people in a similar circumstance. Researchers want to interview surrogates to explore
their views on the PPP.
Objective:
To explore surrogates views on incorporating a PPP into shared medical decision-making.
Eligibility:
People 18 years or older who:
Have acted as a surrogate medical decision-maker within the past 3 years. This includes
decisions about
treatment, medication, hospice care, hospital admission, or discharge.
Are not pregnant
Design:
Participants will be screened by meeting with clinicians in person or by phone to discuss the
study.
Participants will take part in a focus group. This is a small group of people discussing
their thoughts and opinions. This will last for about 2 hours.
Participants will be served a light meal.
Participants will provide information about themselves and their views. They will talk about
their past experiences making medical decisions for someone. They will discuss how they felt
about these decisions.
The PPP will be explained to participants. They will give their views on it.
The research team will audio record the focus group and take notes.
Participants will fill out questionnaires.
Some people cannot make medical treatment decisions on their own. The people who make
decisions on their behalf are called medical surrogates. Sometimes surrogates cannot predict
which treatment course the person or their loved ones would have chosen. The surrogates often
become distressed because of making these decisions. Researchers think a tool called a
Patient Preference Predictor (PPP) may be able to make the process easier. The PPP would
predict what treatment the person would want. This is based on treatment preferences of
similar people in a similar circumstance. Researchers want to interview surrogates to explore
their views on the PPP.
Objective:
To explore surrogates views on incorporating a PPP into shared medical decision-making.
Eligibility:
People 18 years or older who:
Have acted as a surrogate medical decision-maker within the past 3 years. This includes
decisions about
treatment, medication, hospice care, hospital admission, or discharge.
Are not pregnant
Design:
Participants will be screened by meeting with clinicians in person or by phone to discuss the
study.
Participants will take part in a focus group. This is a small group of people discussing
their thoughts and opinions. This will last for about 2 hours.
Participants will be served a light meal.
Participants will provide information about themselves and their views. They will talk about
their past experiences making medical decisions for someone. They will discuss how they felt
about these decisions.
The PPP will be explained to participants. They will give their views on it.
The research team will audio record the focus group and take notes.
Participants will fill out questionnaires.
Current clinical practice relies on shared decision-making between clinicians and surrogates
to make treatment decisions for patients who cannot decide on their own. This decision-making
process is meant to promote medical care that accords with the patient s own preferences and
values. However, empirical data suggest that this model faces two significant challenges.
First, both surrogates and clinicians have trouble predicting which treatment course patients
would have chosen. Second, given the nature of the decisions, surrogates often experience
significant emotional distress as a result of making treatment decisions. To address these
concerns it has been suggested that the shared decision-making process might be supplemented
with a Patient Preference Predictor (PPP). A PPP would provide a prediction of which
treatment a given patient would want based on the treatment preferences of similar patients
in similar circumstances. The present study proposes to interview surrogates who have been
involved in making decisions for an incapacitated patient to explore their perspectives on
the PPP and how to incorporate it into medical decision-making for incapacitated patients..
to make treatment decisions for patients who cannot decide on their own. This decision-making
process is meant to promote medical care that accords with the patient s own preferences and
values. However, empirical data suggest that this model faces two significant challenges.
First, both surrogates and clinicians have trouble predicting which treatment course patients
would have chosen. Second, given the nature of the decisions, surrogates often experience
significant emotional distress as a result of making treatment decisions. To address these
concerns it has been suggested that the shared decision-making process might be supplemented
with a Patient Preference Predictor (PPP). A PPP would provide a prediction of which
treatment a given patient would want based on the treatment preferences of similar patients
in similar circumstances. The present study proposes to interview surrogates who have been
involved in making decisions for an incapacitated patient to explore their perspectives on
the PPP and how to incorporate it into medical decision-making for incapacitated patients..
- INCLUSION CRITERIA:
- 18 years or older
- Experience making at least one medical decision on behalf of an incompetent patient
within the past 3 years. A medical decision for the purposes of this study is defined
as making a decision in a context in which there was more than 1 feasible or
reasonable option.
- Ability to provide informed consent
EXCLUSION CRITERIA:
- Inability to speak, understand, or read English
- The patient on behalf of whom the individual acted as surrogate is deceased for less
than two months.
- In the view of the referring clinician, participation in the study is deemed
excessively burdensome.
- Candidate for study is pregnant
- Court appointed surrogate
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2
sites
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9000 Rockville Pike
Bethesda, Maryland 20892
Bethesda, Maryland 20892
301-496-2563
National Institutes of Health Clinical Center The National Institutes of Health (NIH) Clinical Center in...
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