This study is NOT currently recruiting participants.
Number
16-CC-0168
Sponsoring Institute
National Institutes of Health Clinical Center (CC)
Recruitment Detail
Type: Completed Study; data analyses ongoing Gender: Male & Female Min Age: 18 Max Age: 90
Referral Letter Required
Yes
Population Exclusion(s)
Non-English Speaking;Children
Keywords
Surrogate Decision-making; Health Care; Medical Decisions; End of Life Care; Natural History
Recruitment Keyword(s)
None
Condition(s)
Normal Physiology
Investigational Drug(s)
Investigational Device(s)
Intervention(s)
Supporting Site
NIH Clinical Center
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.
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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
-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
Principal Investigator
Referral Contact
For more information: