Survey to Determine Incarcerated Persons Views on Surrogate Decision Making
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: Survey.
- Who it may be relevant to
- Registry conditions: Healthy Volunteers. Basic parameters: 18 years — 120 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Official title
Survey to Determine Incarcerated Persons Views on Surrogate Decision-Making
Overview
Background: About 180 000 of the people in US prisons are over 55 years old. Aging people often cannot make medical decisions on their own. People who cannot make their own decisions must rely on a surrogate. A surrogate is someone who helps the person s doctor make decisions for them. Researchers want to conduct a survey to ask people in prison who they would like to be their surrogates. But first, they need to find out if their survey questions are clear and easy to understand. Objective: To get imprisoned people s feedback on survey questions about surrogate decision making. Eligibility: People currently imprisoned in a US facility with access to Edovo. They must be able to read and write in English. Design: Participants will answer 26 survey questions. The questions will be on the Edovo Learn software platform. After each question, they will be asked: Was this question clear? If not, please explain in the box below what you found unclear. Also, if you have any suggestions for how we might make the question clearer, please include them. Participants will be asked to imagine themselves in a situation where they cannot make their own medical decisions. They may skip questions or stop the survey if they want. No information that identifies them will be collected. The survey will take about 15 minutes.
Detailed description
Study Description:
Currently, different states have different practices for surrogate decision-making for incarcerated persons who are not able to make their own decisions. These differences raise the challenge of determining which approach or approaches are the best. To address this issue, our research team has developed a questionnaire for incarcerated persons. This questionnaire will be integrated into a software application known as Edovo (https://www.edovo.org/), which is tailored for use in correctional facilities. This research aims to gather incarcerated persons preferences related to surrogate decision-making. The study team hopes to identify best practices that could inform practices and policies across states, ultimately enhancing the support provided to this vulnerable population.
Objectives:
Primary Objective:
Explore incarcerated persons views regarding surrogate decision-making if they become unable to make their own medical decisions.
Endpoints:
Primary Endpoints:
1. Describe incarcerated persons preferences for surrogate decisionmakers if they become unable to make their own medical decisions. 2. The proportion of incarcerated persons who endorse the use of a patient preference predictor (PPP) for surrogate decision-making if they become unable to make their own medical decisions.
Secondary Endpoint:
The discrepancy between incarcerated persons who endorse the use of a PPP in general, but not for their own treatment.
Interventions
- Other Survey
Tablet based survey
Primary outcome measures
- Views on surrogates [Time frame: end of study]
- Views on PPP [Time frame: end of study]
Eligibility criteria
- INCLUSION CRITERIA:
In order to be eligible to participate in this study, an individual must meet all of the following criteria:
- Currently incarcerated in a United States facility with Edovo educational tablets
- Ability to understand the consent form and survey
- Willingness to give informed consent
Exclusion criteria
An individual who meets any of the following criteria will be excluded from participation in this study:
1\. Inability to read or write in English
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: Yes
Study design
- Observational model
- Other
Study locations
United States · 1 center
- National Institutes of Health Clinical Center — Bethesda
Publications
- Batbold S, Duke JD, Riggan KA, DeMartino ES. Decision-Making for Hospitalized Incarcerated Patients Lacking Decisional Capacity. JAMA Intern Med. 2024 Jan 1;184(1):28-35. doi: 10.1001/jamainternmed.2023.5794. PMID 38048093
- Helmly V, Garica M, Williams B, Howell BA. A review and content analysis of U.S. Department of Corrections end-of-life decision making policies. Int J Prison Health. 2022 Jun 2;18(2):165-175. doi: 10.1108/IJPH-06-2021-0060. Epub 2021 Dec 27. PMID 34939768
- Earp BD, Porsdam Mann S, Allen J, Salloch S, Suren V, Jongsma K, Braun M, Wilkinson D, Sinnott-Armstrong W, Rid A, Wendler D, Savulescu J. A Personalized Patient Preference Predictor for Substituted Judgments in Healthcare: Technically Feasible and Ethically Desirable. Am J Bioeth. 2024 Jul;24(7):13-26. doi: 10.1080/15265161.2023.2296402. Epub 2024 Jan 16. PMID 38226965
- Pope TM. Making medical decisions for patients without surrogates. N Engl J Med. 2013 Nov 21;369(21):1976-8. doi: 10.1056/NEJMp1308197. No abstract available. PMID 24256375
Identifiers
NCT: NCT07751731 · 10002491 · 002491-CC