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There is one clinical trial.
The proposed study will adapt and pilot test an efficacious advance care planning interventions, SPIRIT (Sharing Patient's Illness Representations to Increase Trust), with patients with mild dementia and their surrogates to promote open, honest discussions while such discussions about end-of-life care are possible. The study includes two phases: Phase I to adapt, pretest, and refine SPIRIT, and Phase II to pilot test the refined SPIRIT to formally evaluate its feasibility, acceptability, and preliminary efficacy. The final products will be the modified SPIRIT intervention that improves dementia patient and surrogate outcomes, and standardized intervention manuals, including the SPIRIT Interview Guide, fidelity assessment, and training materials. Patient and surrogate decision maker dyads will participate in a single SPIRIT session and will then have a follow up phone call 2-3 days later. One year after the SPIRIT session some surrogates will be contacted to provide additional feedback about the intervention.
Description: Dyad congruence will be assessed using the Goals-of-Care Tool which has been modified to include two scenarios relevant to the context of dementia. There are three response options: "The goals of care should focus on delaying my death no matter what, and thus I want to continue life-sustaining treatment", "The goals of care should focus on my comfort and peace, and thus I do not want life-sustaining treatment", and "I am not sure". Patients and surrogates complete this tool independently and their responses are then compared to determine dyad congruence (either congruent in both scenarios or incongruent). If both members of the dyad endorse "I am not sure", they are considered incongruent.
Measure: Change in dyad congruence among Phase II participants Time: Baseline, follow up phone call (2-3 days post-intervention)Description: Surrogate decision-making confidence will be measured using the 5-item Decision Making Confidence (DMC) scale. DMC assesses a surrogate's confidence in knowing the patient's wishes, ability to make treatment decisions even in a highly stressful situation, ability to seek information about risks and benefits of medical choices, ability to handle unwanted pressure from others, and ability to communicate with providers about the patient's wishes. Surrogates indicate how confident they are about making medical decisions, if the patient becomes unable to make their own decisions, by their level of agreement with statements along a scale of (0) "not confident at all" to (4) "Very confident". Total scores range from 0 - 20, with higher scores indicating greater confidence.
Measure: Change in Surrogate's Decision Making Confidence (DMC) scale score among Phase II participants Time: Baseline, follow up phone call (2-3 days post-intervention)Description: The Overall Preparedness Scale for end-of-life decision making for surrogates is a 21-item investigator-developed measure. The measure assesses the level of preparedness for end-of-life decision making in the cognitive, emotional, and behavioral dimensions on a 4-point scale (1=strongly disagree to 4=strongly agree). Total scores range from 21 to 84, with higher scores indicating higher levels of preparedness.
Measure: Change in Surrogate's Overall Preparedness Scale Time: Baseline, follow up phone call (2-3 days post-intervention)Description: Medical records will be reviewed to determine if the patient completed an advance directive (a medical power of attorney or living will) by 12 months post-intervention. If there is no documentation, the surrogate will be contacted to get confirmation on the status of the Advance Directive.
Measure: Completion of Advance Directives among Phase I participants Time: 12 months post-interventionDescription: Medical records will be reviewed to determine if the patient completed an advance directive (a medical power of attorney or living will) by 12 months post-intervention. If there is no documentation, the surrogate will be contacted to get confirmation on the status of the Advance Directive.
Measure: Completion of Advance Directives among Phase II participants Time: 12 months post-interventionDescription: The Overall Preparedness Scale for end-of-life decision making for patients is a 20-item investigator-developed measure. The measure assesses the level of preparedness for end-of-life decision making in the cognitive, emotional, and behavioral dimensions on a 4-point scale (1=strongly disagree to 4=strongly agree). Total scores range from 20 to 80, with higher scores indicating higher levels of preparedness.
Measure: Change in Patient's Overall Preparedness Scale Time: Baseline, follow up phone call (2-3 days post-intervention)Alphabetical listing of all HPO terms. Navigate: Correlations Clinical Trials
Data processed on September 26, 2020.
An HTML report was created for each of the unique drugs, MeSH, and HPO terms associated with COVID-19 clinical trials. Each report contains a list of either the drug, the MeSH terms, or the HPO terms. All of the terms in a category are displayed on the left-hand side of the report to enable easy navigation, and the reports contain a list of correlated drugs, MeSH, and HPO terms. Further, all reports contain the details of the clinical trials in which the term is referenced. Every clinical trial report shows the mapped HPO and MeSH terms, which are also hyperlinked. Related HPO terms, with their associated genes, protein mutations, and SNPs are also referenced in the report.
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