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| Name | Class |
|---|---|
| Patient-Centered Outcomes Research Institute | OTHER |
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The purpose of this study is to improve care delivered to patients with serious illness by enhancing communication among patients, families, and clinicians in the outpatient setting. We are testing a new way to help patients share their preferences for talking about end-of-life care with their clinicians and families. To do this we created a simple, short feedback form. The form is designed to help clinicians understand what patients would like to talk about. The goal of this research study is to show that using a feedback form is possible and can be helpful for patients and their families.
Four decades of research on end-of-life care indicate that people who are dying often spend their final days with a significant burden of pain and other symptoms and receive care they would not choose. Patient-clinician communication about end-of-life care is an important focus for improving care for three reasons: 1) when it occurs, it is associated with improved quality of life, reduced anxiety, and fewer intensive life-sustaining therapies at the end of life; 2) physicians frequently do not have discussions about end-of-life care with their patients even though most patients desire these discussions; and 3) our preliminary studies suggest that a simple intervention based on each patient's informational needs and preferences can increase the occurrence and quality of patient-clinician communication about end-of-life care. By tailoring patient-clinician discussions to the individual patient, patients will be able to make care decisions that are best for them and clinicians will be able to provide patients with the care patients' desire.
Our long-term goal is to ensure that patients receive the end-of-life care they desire through improved patient-clinician communication. If effective, this health-system intervention will improve: 1) the occurrence and quality of patient-centered communication about end-of-life care for patients with chronic life-limiting illness and their families; 2) the agreement between patients' wishes for care and care received; and 3) the burden of symptoms of anxiety and depression experienced by patients and families.
We propose a randomized trial of a feedback form, called a "Jumpstart" form, provided to patients, family members and clinicians, specifying the individual patient's communication needs and preferences concerning end-of- life care. The trial will be tested with clinicians (n=120) who provide primary or specialty care to eligible patients at clinics of two large healthcare systems. Eligible patients (up to 6 per clinician, goal n=500) will include those with chronic, life-limiting illness. Family members of patients and interdisciplinary team members of primary clinicians may participate. Primary clinicians will be randomized to the intervention or usual care. The intervention's effectiveness will be compared with usual care using validated self-report questionnaires that will be collected longitudinally (baseline/enrollment, within 2 weeks of the target visit, 3 months, 6 months) from patients and families. Analyses include statistical approaches that take into account that there will be more than one patient for each physician and that data are collected at multiple time points.
Outcomes of this study include patient assessments of: 1) frequency and quality of patient/clinician communication; 2) agreement between care patients desire and care patients receive; and 3) symptoms of anxiety and depression.
We will also use qualitative data to accomplish the following goals: 1) to explore subjects' experiences with the study's activities; 2) to understand barriers to participation; and 3) to explore patient and family experiences with the intervention. To obtain these goals, we will contact a total of 30-40 participants, selected from all subject groups, to participate in one-on-one semi-structured interviews during which they will be asked to share their experiences as a study participant and their perspectives on study activities.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Feedback Group | Experimental | Subjects will complete surveys and assessments and will be given the Communication Feedback Form for Patients with Serious Illness to use prior to and during a target outpatient visit. |
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| Comparison/Usual Care Group | No Intervention | Subjects will only complete surveys and assessments. |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Communication Feedback Form for Patients with Serious Illness | Behavioral | The intervention, based on self-efficacy theory, identifies patients' preferences for communication about end-of-life care (EOLC) and barriers and facilitators to this communication, and collates these data into a feedback form. The feedback forms are tailored to each recipient (clinician, patient, family) to support the communication tasks which that recipient will address. Feedback forms are sent to participants prior to the target clinic visit. The primary clinician's form suggests referral to palliative care if there are "potentially unmet palliative-care communication needs." All forms include "tips" to help the recipient respond to communication preferences appropriately. |
| Measure | Description | Time Frame |
|---|---|---|
| Occurrence of Discussion About Goals of Care at Target Visit | Patient's response to question, "Did you discuss with this doctor the kind of medical care you would want if you were too sick to speak for yourself?" | 2 weeks after target visit |
| Measure | Description | Time Frame |
|---|---|---|
| Occurrence of Discussion About Goals of Care at Target Visit | Electronic Health Record (EHR) documentation of discussion about advance care planning, prognosis, treatment preference, hospice, palliative care, or Physician Orders for Life-Sustaining Treatment (POLST) at target visit | Target visit |
| Occurrence of Discussion About Goals of Care at Target Visit Among Patients Who Did Not Object to Future Discussion at Baseline |
| Measure | Description | Time Frame |
|---|---|---|
| Group Differences - Treatment Preference (Adjustment Variable for Outcome Measuring Goal-concordant Care) | Binary variable indicating whether patient's current preference was for life-extension or comfort care | 3 months after target visit |
| Group Differences - Stable Treatment Preference (Filter for Subgroup Analysis of Goal-concordant Care) |
Inclusion Criteria:
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| J. Randall Curtis, MD, MPH | University of Washington | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Valley Medical Center | Renton | Washington | 98058 | United States | ||
| Harborview Medical Center |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 21940765 | Background | Au DH, Udris EM, Engelberg RA, Diehr PH, Bryson CL, Reinke LF, Curtis JR. A randomized trial to improve communication about end-of-life care among patients with COPD. Chest. 2012 Mar;141(3):726-735. doi: 10.1378/chest.11-0362. Epub 2011 Sep 22. | |
| 15947336 | Background | Knauft E, Nielsen EL, Engelberg RA, Patrick DL, Curtis JR. Barriers and facilitators to end-of-life care communication for patients with COPD. Chest. 2005 Jun;127(6):2188-96. doi: 10.1378/chest.127.6.2188. |
| Label | URL |
|---|---|
| Click here for more information about this study. PCORI Project Summary: Health System Intervention to Improve Communication about End-of-Life Care for Vulnerable Patients | View source |
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635 CLINICIANS assessed for eligibility; 503 excluded; 132 enrolled. Unit of randomization was clinician. 11 IP TEAM members identified; 4 enrolled. 1113 PATIENTS assessed for eligibility; 576 excluded; 537 enrolled. 142 FAMILY identified; 23 excluded; 119 enrolled. Subjects were enrolled if they completed a baseline survey prior to target visit.
CLINICIANS and INTERPROFESSIONAL (IP) TEAM recruited from Feb 2014 to Nov 2015. PATIENTS and FAMILY recruited from Mar 2014 to Jun 2016. Potential subjects received introductory letters and phone calls to assess interest and eligibility. INTERVIEWEES were selected via purposive sampling from those who completed the intervention activities.
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| ID | Title | Description |
|---|---|---|
| FG000 | Clinician Intervention | Received "Jumpstart" feedback forms and education |
| FG001 | Clinician Control | Received/Provided usual care, surveys only |
| Title | Milestones | Reasons Not Completed | |||||
|---|---|---|---|---|---|---|---|
| Overall Study |
|
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Patient's response to question, "Did you discuss with this doctor the kind of medical care you would want if you were too sick to speak for yourself?" |
| 2 weeks after target visit |
| Occurrence of Discussion About Goals of Care at Target Visit Among Patients Who Did Not Object to Future Discussion at Baseline | Electronic Health Record (EHR) documentation of discussion about advance care planning, prognosis, treatment preference, hospice, palliative care, or Physician Orders for Life-Sustaining Treatment (POLST) at target visit | Target visit |
| Goal-Concordant Care | Binary variable indicating whether patient's reported focus of current treatment was concordant with treatment preference | 3 months after target visit |
| Goal-Concordant Care Among Patients With Stable Treatment Preference | Binary variable indicating whether patient's reported focus of current treatment was concordant with treatment preference | 3 months after target visit |
| Quality of Communication (QOC): Four-Indicator Latent Construct | Quality of Communication: patient ratings of clinician on seven aspects of end-of-life communication, each aspect having a pseudo-continuous response range of 0 ('clinician didn't do this') to 11 ('the very best I could imagine'). Measured with QOC items 1, 2, 5, & 6 (measurement invariance imposed between groups and over time). Outcome is a latent variable, which is not observable, nor is it a composite score that can be mathematically computed (e.g., as a sum or average) from its measured indicators. Instead, it is an abstract construct that is inferred through a mathematical model; it represents a concept and is, therefore, a hypothetical variable. Theoretical range: unknown; the latent variable is a hypothetical - not an actual - variable Actual range: inapplicable; cannot be determined; this is an indirectly-measured latent variable; Higher value indicates better outcome (i.e., higher quality communication) Unit of measurement: scores on a scale | 2 weeks from target visit |
| Quality of Communication (QOC): Individual QOC Items | Quality of Communication: patient ratings of clinician on seven aspects of end-of-life communication, each aspect having a pseudo-continuous response range of 0 ('clinician didn't do this') to 11 ('the very best I could imagine'). Individual QOC Items. Theoretical range: 0-11 Actual range: 0-11 Higher value indicates better outcome (i.e., higher quality communication) Unit of measurement: units on a scale | 2 weeks from target visit |
| Patient Health Questionnaire (PHQ-8): Two-Indicator Latent Construct | Patient Health Questionnaire: A self-report measure of depressive symptoms. Eight symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Two-Indicator Latent Construct: Measured with PHQ items 1 & 2 (measurement invariance imposed between groups and over time). Outcome is a latent variable, which is not observable, nor is it a composite score that can be mathematically computed (e.g., as a sum or average) from its measured indicators. Instead, it is an abstract construct that is inferred through a mathematical model; it represents a concept and is, therefore, a hypothetical variable. Theoretical range: unknown; the latent variable is a hypothetical - not an actual - variable Actual range: inapplicable; cannot be determined; this is an indirectly-measured latent variable Higher value indicates worse outcome (i.e., higher level of depressive symptoms) Unit of measurement: scores on a scale | 3 months after target visit |
| Patient Health Questionnaire (PHQ-8): Eight-Item Scale | Patient Health Questionnaire: A self-report measure of depressive symptoms. Eight symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Eight-Item Scale: Sum of responses for the eight symptoms (weighted by 8/7 if only 7 items answered). Theoretical range: 0-24 Actual range: 0-24 Higher value indicates worse outcome (i.e., higher level of depressive symptoms) Unit of measurement: scores on a scale | 3 months after target visit |
| Patient Health Questionnaire (PHQ-8): Two-Indicator Latent Construct | Patient Health Questionnaire: A self-report measure of depressive symptoms. Eight symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Two-Indicator Latent Construct: Measured with PHQ items 1 & 2 (measurement invariance imposed between groups and over time). Outcome is a latent variable, which is not observable, nor is it a composite score that can be mathematically computed (e.g., as a sum or average) from its measured indicators. Instead, it is an abstract construct that is inferred through a mathematical model; it represents a concept and is, therefore, a hypothetical variable. Theoretical range: unknown; the latent variable is a hypothetical - not an actual - variable Actual range: inapplicable; cannot be determined; this is an indirectly-measured latent variable Higher value indicates worse outcome (i.e., higher level of depressive symptoms) Unit of measurement: scores on a scale | 6 months after target visit |
| Patient Health Questionnaire (PHQ-8): Eight-Item Scale | Patient Health Questionnaire: A self-report measure of depressive symptoms. Eight symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Eight-Item Scale: Sum of responses for the eight symptoms (weighted by 8/7 if only 7 items answered). Theoretical range: 0-24 Actual range: 0-24 Higher value indicates worse outcome (i.e., higher level of depressive symptoms) Unit of measurement: scores on a scale | 6 months after target visit |
| Generalized Anxiety Disorder (GAD-7): Two-Indicator Latent Construct | Generalized Anxiety Disorder: A self-report measure of anxiety symptoms. Seven symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Two-Indicator Latent Construct: Measured with GAD items 1 & 2 (measurement invariance imposed between groups and over time). Outcome is a latent variable, which is not observable, nor is it a composite score that can be mathematically computed (e.g., as a sum or average) from its measured indicators. Instead, it is an abstract construct that is inferred through a mathematical model; it represents a concept and is, therefore, a hypothetical variable. Theoretical range: unknown; the latent variable is a hypothetical - not an actual - variable Actual range: inapplicable; cannot be determined; this is an indirectly-measured latent variable Higher value indicates worse outcome (i.e., higher level of anxiety symptoms) Unit of measurement: scores on a scale | 3 months after target visit |
| Generalized Anxiety Disorder (GAD-7): Seven-Item Scale | Generalized Anxiety Disorder: A self-report measure of anxiety symptoms. Seven symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Seven-Item Scale: Sum of responses for the seven symptoms (weighted by 7/6 if only 6 items answered). (Strong floor effect.) Theoretical range: 0-21 Actual range: 0-21 Higher value indicates worse outcome (i.e., higher level of anxiety symptoms) Unit of measurement: scores on a scale | 3 months after target visit |
| Generalized Anxiety Disorder (GAD-7): Two-Indicator Latent Construct | Generalized Anxiety Disorder: A self-report measure of anxiety symptoms. Seven symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Two-Indicator Latent Construct: Measured with GAD items 1 & 2 (measurement invariance imposed between groups and over time). Outcome is a latent variable, which is not observable, nor is it a composite score that can be mathematically computed (e.g., as a sum or average) from its measured indicators. Instead, it is an abstract construct that is inferred through a mathematical model; it represents a concept and is, therefore, a hypothetical variable. Theoretical range: unknown; the latent variable is a hypothetical - not an actual - variable Actual range: inapplicable; cannot be determined; this is an indirectly-measured latent variable Higher value indicates worse outcome (i.e., higher level of anxiety symptoms) Unit of measurement: scores on a scale | 6 months after target visit |
| Generalized Anxiety Disorder (GAD-7): Seven-Item Scale | Generalized Anxiety Disorder: A self-report measure of anxiety symptoms. Seven symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Seven-Item Scale: Sum of responses for the seven symptoms (weighted by 7/6 if only 6 items answered). (Strong floor effect.) Theoretical range: 0-21 Actual range: 0-21 Higher value indicates worse outcome (i.e., higher level of anxiety symptoms) Unit of measurement: scores on a scale | 6 months after target visit |
| Avoidance of Life-Sustaining Therapies, All Patients | Review of EHR documentation to assess use of three indicators of life-sustaining therapies (LST): admission to an ICU, receipt of CPR, and receipt of mechanical ventilation | 6-month period following the target visit |
| Avoidance of Life-Sustaining Therapies, Patients With Comfort Care Preference | Review of EHR documentation to assess use of three indicators of life-sustaining therapies (LST): admission to an ICU, receipt of CPR, and receipt of mechanical ventilation for patients preferring "comfort" (quality of life over extending life) at the end-of-life | 6-month period following the target visit |
| Palliative Care Consultation, Inpatient Stay - All Patients | EHR documentation of palliative care consultation during an inpatient stay for all patients with target visit and chart abstraction. | 3-month period following the target visit |
| Palliative Care Consultation, Inpatient Stay - Patients Most Likely to Benefit | EHR documentation of palliative care consultation during an inpatient stay for patients who reported preference for "comfort care" (quality of life over extending life) and wanted a discussion. | 3-month period following the target visit |
| Palliative Care Consultation, Inpatient Stay - All Patients | EHR documentation of palliative care consultation during an inpatient stay for all patients with target visit and chart abstraction. | 6-month period following the target visit |
| Palliative Care Consultation, Inpatient Stay - Patients Most Likely to Benefit | EHR documentation of palliative care consultation during an inpatient stay for patients who reported preference for "comfort care" (quality of life over extending life) and wanted a discussion. | 6-month period following the target visit |
| Palliative Care Referral, Outpatient Visit - All Patients | EHR documentation of referral to palliative care services, or discussion about a referral, during an outpatient visit. | 3-month period following the target visit |
| Palliative Care Referral, Outpatient Visit - Patients Most Likely to Benefit | EHR documentation of referral to palliative care services, or discussion about a referral, during an outpatient visit for patients who reported preference for "comfort care" (quality of life over extending life) and wanted a discussion. | 3-month period following the target visit |
| Palliative Care Referral, Outpatient Visit - All Patients | EHR documentation of referral to palliative care services, or discussion about a referral, during an outpatient visit. | 6-month period following the target visit |
| Palliative Care Referral, Outpatient Visit - Patients Most Likely to Benefit | EHR documentation of referral to palliative care services, or discussion about a referral, during an outpatient visit for patients who reported preference for "comfort care" (quality of life over extending life) and wanted a discussion. | 6-month period following the target visit |
| Palliative Care Consultation and/or Referral - All Patients | EHR documentation of palliative care referral during an outpatient visit and/or palliative care consultation during an inpatient stay. | 3-month period following the target visit |
| Palliative Care Consultation and/or Referral - Patients Most Likely to Benefit | EHR documentation of palliative care referral during an outpatient visit and/or palliative care consultation during an inpatient stay for patients who reported preference for "comfort care" (quality of life over extending life) and wanted a discussion. | 3-month period following the target visit |
| Palliative Care Consultation and/or Referral - All Patients | EHR documentation of palliative care referral during an outpatient visit and/or palliative care consultation during an inpatient stay. | 6-month period following the target visit |
| Palliative Care Consultation and/or Referral - Patients Most Likely to Benefit | EHR documentation of palliative care referral during an outpatient visit and/or palliative care consultation during an inpatient stay for patients who reported preference for "comfort care" (quality of life over extending life) and wanted a discussion. | 6-month period following the target visit |
Binary variable indicating whether patient's treatment preference was stable between target visit (or baseline, if no 2-week questionnaire was returned) and 3 months. |
| 3 months after target visit |
| Seattle |
| Washington |
| 98104 |
| United States |
| Swedish Medical Center | Seattle | Washington | 98122 | United States |
| Northwest Hospital and Medical Center | Seattle | Washington | 98133 | United States |
| University of Washington Medical Center | Seattle | Washington | 98195 | United States |
| UW Neighborhood Clinics | Seattle | Washington | 98195 | United States |
| 9436892 | Background | Curtis JR, Patrick DL. Barriers to communication about end-of-life care in AIDS patients. J Gen Intern Med. 1997 Dec;12(12):736-41. doi: 10.1046/j.1525-1497.1997.07158.x. |
| 15332385 | Background | Curtis JR, Engelberg RA, Nielsen EL, Au DH, Patrick DL. Patient-physician communication about end-of-life care for patients with severe COPD. Eur Respir J. 2004 Aug;24(2):200-5. doi: 10.1183/09031936.04.00010104. |
| 17040146 | Background | Engelberg R, Downey L, Curtis JR. Psychometric characteristics of a quality of communication questionnaire assessing communication about end-of-life care. J Palliat Med. 2006 Oct;9(5):1086-98. doi: 10.1089/jpm.2006.9.1086. |
| 12114382 | Background | Curtis JR, Wenrich MD, Carline JD, Shannon SE, Ambrozy DM, Ramsey PG. Patients' perspectives on physician skill in end-of-life care: differences between patients with COPD, cancer, and AIDS. Chest. 2002 Jul;122(1):356-62. doi: 10.1378/chest.122.1.356. |
| 30025937 | Derived | Coats H, Downey L, Sharma RK, Curtis JR, Engelberg RA. Quality of Communication and Trust in Patients With Serious Illness: An Exploratory Study of the Relationships of Race/Ethnicity, Socioeconomic Status, and Religiosity. J Pain Symptom Manage. 2018 Oct;56(4):530-540.e6. doi: 10.1016/j.jpainsymman.2018.07.005. Epub 2018 Jul 17. |
| 29802770 | Derived | Curtis JR, Downey L, Back AL, Nielsen EL, Paul S, Lahdya AZ, Treece PD, Armstrong P, Peck R, Engelberg RA. Effect of a Patient and Clinician Communication-Priming Intervention on Patient-Reported Goals-of-Care Discussions Between Patients With Serious Illness and Clinicians: A Randomized Clinical Trial. JAMA Intern Med. 2018 Jul 1;178(7):930-940. doi: 10.1001/jamainternmed.2018.2317. |
| 27265813 | Derived | Fakhri S, Engelberg RA, Downey L, Nielsen EL, Paul S, Lahdya AZ, Treece PD, Curtis JR. Factors Affecting Patients' Preferences for and Actual Discussions About End-of-Life Care. J Pain Symptom Manage. 2016 Sep;52(3):386-94. doi: 10.1016/j.jpainsymman.2016.03.012. Epub 2016 Jun 3. |
| The End-of-Life Care Research Program at the UW School of Medicine | View source |
| The Palliative Care Center of Excellence at the University of Washington | View source |
| FG002 | IP Team Intervention | Received "Jumpstart" feedback forms and education |
| FG003 | IP Team Control | Received/Provided usual care, surveys only |
| FG004 | Patient Intervention | Received "Jumpstart" feedback forms and education |
| FG005 | Patient Control | Received usual care, surveys only |
| FG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| FG007 | Family Member Control | Received usual care, surveys only |
| FG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
| Had Target Visit |
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| Completed After-visit Survey |
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| Completed 2-Week Survey |
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| Completed 3-Month Survey |
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| Completed 6-Month Survey |
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| Qualitative Interviews |
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| COMPLETED |
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| NOT COMPLETED |
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Measures do not apply to Interview Subjects (Interviewees). These subjects represent a subset of study participants; interviewees did not separately contribute data and are excluded from the analyses.
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| ID | Title | Description |
|---|---|---|
| BG000 | Clinician Intervention | Received "Jumpstart" feedback forms and education |
| BG001 | Clinician Control | Received/Provided usual care, surveys only |
| BG002 | IP Team Intervention | Received "Jumpstart" feedback forms and education |
| BG003 | IP Team Control | Received/Provided usual care, surveys only |
| BG004 | Patient Intervention | Received "Jumpstart" feedback forms and education |
| BG005 | Patient Control | Received usual care, surveys only |
| BG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| BG007 | Family Member Control | Received usual care, surveys only |
| BG008 | Interviewees | Key informants: Clinicians, Patients and Family Members. These subjects did not complete baseline measures. |
| BG009 | Total | Total of all reporting groups |
| Units | Counts |
|---|---|
| Participants |
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| Title | Description | Population Description | Parameter Type | Dispersion Type | Unit of Measure | Calculate Percentage | Denominator Units Selected | Denominators | Classes | |||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Age, Categorical | Count of Participants | Participants |
| |||||||||||
| Age, Continuous | Mean | Standard Deviation | years |
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| Sex: Female, Male | Count of Participants | Participants |
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| Race/Ethnicity, Customized | Count of Participants | Participants |
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| Clinician Type | Binary measure: physician or nurse practicioner | Reporting on Clinician subjects only. | Count of Participants | Participants |
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| Clinician's Specialty | Area of specialization | Reporting on Clinician subjects only. | Count of Participants | Participants |
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| Competence [Communication & End-of-Life (EOL) Care] | Clinician self-assessment of competency in talking with patients about end-of-life care using a scale from 1="Not very competent" to 5="Very competent". | Questionnaire asked of clinicians at baseline. One intervention clinician did not return a baseline survey. | Mean | Standard Deviation | units on a scale |
| ||||||||
| Patient Self-Assessed Health Status | Five ordinal response options: 0 (excellent), 1 (very good), 2 (good), 3 (fair), 4 (poor) | Survey item asked of patients at baseline. Two intervention patients did not provide a valid response. | Median | Inter-Quartile Range | units on a scale |
| ||||||||
| Patient Education Level | Self-report measure of highest level of education completed: 7 ordinal categories: (0) 8th grade or less, (1) some high school, (2) HS diploma or equivalent, (3) some post-HS education, (4) 4-year college degree, (5) some graduate school, (6) graduate degree. | Survey item asked of patients at baseline. One intervention patient did not provide a valid response. | Median | Inter-Quartile Range | units on a scale |
| ||||||||
| Patient Average Monthly Income | Self-report measure of average pre-tax household monthly income for last 3 years: 8 ordinal categories: (0) no income, (1) $1-$500, (2) $501-$1000, (3) $1001-$1500, (4) $1501-$2000, (5) $2001-$3000, (6) $3001-$4000, (7) $4001 or more. | Survey item asked of patients at baseline. Some intervention and control patients did not provide a valid response. | Median | Inter-Quartile Range | units on a scale |
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| Preference Regarding Future Discussion with Clinician | Patient's indication of desire to avoid future discussion about treatment wishes with the clinician. "Would you like to have a discussion of this type with this doctor?" or "Would you like to have additional discussions with this doctor about this?" | Based on survey items asked of patients at baseline. | Count of Participants | Participants |
| |||||||||
| Quality of Communication (QOC): Four-Indicator Latent Construct | Quality of Communication: patient ratings of enrolled Clinician on seven aspects of end-of-life communication, each aspect having a pseudo-continuous response range of 0 ('clinician didn't do this') to 11 ('the very best I could imagine'). Four-Indicator Latent Construct: Measured with QOC items 1, 2, 5, & 6 (measurement invariance imposed between groups and over time) | All 4 items answered at baseline & 2 weeks: 127 valid intervention responses; 141 valid control responses. Unit of measure: continuous measure with control group mean fixed at zero. | Mean | Standard Deviation | scores on a scale |
| ||||||||
| Quality of Communication (QOC): Individual QOC Items | Quality of Communication: patient ratings of clinician on seven aspects of end-of-life communication, each aspect having a pseudo-continuous response range of 0 ('clinician didn't do this') to 11 ('the very best I could imagine'). Individual QOC Items : all have strong floor effects (resulting in median=0). | Survey item asked of patients at baseline. Some intervention and control patients did not provide valid responses on all items. | Median | Inter-Quartile Range | units on a scale |
| ||||||||
| Patient Health Questionnaire (PHQ-8): Two-Indicator Latent Construct | Patient Health Questionnaire: A self-report measure of depressive symptoms. Eight symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Two-Indicator Latent Construct: Measured with PHQ items 1 & 2 (measurement invariance imposed between groups and over time) | Both items answered at baseline, 3-months & 6-months: 117 valid intervention responses; 145 valid control responses. Unit of measure: continuous measure with control group mean fixed at zero. | Mean | Standard Deviation | scores on a scale |
| ||||||||
| Patient Health Questionnaire (PHQ-8): Eight-Item Scale | Patient Health Questionnaire: A self-report measure of depressive symptoms. Eight symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Eight-Item Scale: Sum of responses for the eight symptoms (weighted by 8/7 if only 7 items answered) | Survey items asked of patients at baseline. Some intervention and control patients did not provide valid responses on 7+ items. | Mean | Standard Deviation | scores on a scale |
| ||||||||
| Generalized Anxiety Disorder (GAD-7): Two-Indicator Latent Construct | Generalized Anxiety Disorder: A self-report measure of anxiety symptoms. Seven symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Two-Indicator Latent Construct: Measured with GAD items 1 & 3 (measurement invariance imposed between groups and over time) | Both items answered at baseline, 3-months & 6-months: 127 valid intervention responses; 150 valid control responses. Unit of measure: continuous measure with control group mean fixed at zero. | Mean | Standard Deviation | scores on a scale |
| ||||||||
| Generalized Anxiety Disorder (GAD-7): Seven-Item Scale | Generalized Anxiety Disorder: A self-report measure of anxiety symptoms. Seven symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Seven-Item Scale: Sum of responses for the seven symptoms (weighted by 7/6 if only 6 items answered). (Strong floor effect) | Survey items asked of patients at baseline. Some intervention and control patients did not provide valid responses on 6+ items. | Median | Inter-Quartile Range | scores on a scale |
| ||||||||
| Choosing Care | "If you had to make a choice at this time, would you [patient]/your family member [family member] prefer a plan of medical care that focuses on extending your/his or her life as much as possible, even if it means having more pain and discomfort, or would you/he or she want a plan of medical care that focuses on relieving pain and discomfort as much as possible, even if that means not living as long?" | Survey items asked of patients & family members at baseline. Two control patients and two control family members did not answer this item. | Count of Participants | Participants |
| |||||||||
| Focus of Care | "Using those same categories, which of the following best describes the focus of the medical care you are currently receiving?" [patient] or "Using those same categories, which of the following best describes the focus of the medical care your family member/friend is currently receiving?" [family member] | Survey items asked of patients & family members at baseline. Nine patients [5 intervention and 4 control] and three family members [1 intervention and 2 control] did not answer this item. | Count of Participants | Participants |
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| Barriers | "Which, if any, of the following statements are reasons that you might not want to talk with [your MD/ARNP/PA] about care that you would choose if you were to become very sick?' Answers: Applies to me (true=1) or Does not apply to me (false=0) | Survey items asked of patients at baseline. Row values indicate endorsement ("applies to me") of barrier item. Not all patients answered all items. | Count of Participants | Participants |
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| Facilitators | "People also have a number of reasons for wanting to talk about care that they might choose if they were to become very sick. Which, if any, of the following statements are reasons you might want to discuss care choices with [your MD/ARNP/PA]?' Answers: Applies to me (true) or Does not apply to me (false). | Survey items asked of patients at baseline. Row values indicate endorsement ("applies to me") of facilitator item. Not all patients answered all items. | Count of Participants | Participants |
|
| Type | Title | Description | Population Description | Reporting Status | Anticipated Posting Date | Parameter Type | Dispersion Type | Unit of Measure | Calculate Percentage | Time Frame | Units Analyzed | Denominator Units Selected | Arm/Group Information | Denominators | Classes | Analyses | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Primary | Occurrence of Discussion About Goals of Care at Target Visit | Patient's response to question, "Did you discuss with this doctor the kind of medical care you would want if you were too sick to speak for yourself?" | Patients completing 2-week questionnaires. Not all patients provided data at this time point. | Posted | Count of Participants | Participants | 2 weeks after target visit |
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| Secondary | Occurrence of Discussion About Goals of Care at Target Visit | Electronic Health Record (EHR) documentation of discussion about advance care planning, prognosis, treatment preference, hospice, palliative care, or Physician Orders for Life-Sustaining Treatment (POLST) at target visit | Target visit abstracted from patient electronic health record (EHR); not all data were available for this time point. | Posted | Count of Participants | Participants | Target visit |
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| Secondary | Occurrence of Discussion About Goals of Care at Target Visit Among Patients Who Did Not Object to Future Discussion at Baseline | Patient's response to question, "Did you discuss with this doctor the kind of medical care you would want if you were too sick to speak for yourself?" | Patients who completed 2-week questionnaires and reported no objection at baseline. | Posted | Count of Participants | Participants | 2 weeks after target visit |
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| Secondary | Occurrence of Discussion About Goals of Care at Target Visit Among Patients Who Did Not Object to Future Discussion at Baseline | Electronic Health Record (EHR) documentation of discussion about advance care planning, prognosis, treatment preference, hospice, palliative care, or Physician Orders for Life-Sustaining Treatment (POLST) at target visit | Patient EHR abstracted for target visit and had no objection at baseline. | Posted | Count of Participants | Participants | Target visit |
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| Secondary | Goal-Concordant Care | Binary variable indicating whether patient's reported focus of current treatment was concordant with treatment preference | Survey items asked of patients at 3-months. Not all patients provided data at this time point. | Posted | Count of Participants | Participants | 3 months after target visit |
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| Secondary | Goal-Concordant Care Among Patients With Stable Treatment Preference | Binary variable indicating whether patient's reported focus of current treatment was concordant with treatment preference | Survey items asked of patients at 3-months. Not all patients provided data at this time point. | Posted | Count of Participants | Participants | 3 months after target visit |
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| Secondary | Quality of Communication (QOC): Four-Indicator Latent Construct | Quality of Communication: patient ratings of clinician on seven aspects of end-of-life communication, each aspect having a pseudo-continuous response range of 0 ('clinician didn't do this') to 11 ('the very best I could imagine'). Measured with QOC items 1, 2, 5, & 6 (measurement invariance imposed between groups and over time). Outcome is a latent variable, which is not observable, nor is it a composite score that can be mathematically computed (e.g., as a sum or average) from its measured indicators. Instead, it is an abstract construct that is inferred through a mathematical model; it represents a concept and is, therefore, a hypothetical variable. Theoretical range: unknown; the latent variable is a hypothetical - not an actual - variable Actual range: inapplicable; cannot be determined; this is an indirectly-measured latent variable; Higher value indicates better outcome (i.e., higher quality communication) Unit of measurement: scores on a scale | All 4 items asked of patients at baseline & 2 weeks. Not all patients provided data at these time points. Continuous measure with control group mean fixed at zero at baseline. | Posted | Mean | Standard Deviation | scores on a scale | 2 weeks from target visit |
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| Secondary | Quality of Communication (QOC): Individual QOC Items | Quality of Communication: patient ratings of clinician on seven aspects of end-of-life communication, each aspect having a pseudo-continuous response range of 0 ('clinician didn't do this') to 11 ('the very best I could imagine'). Individual QOC Items. Theoretical range: 0-11 Actual range: 0-11 Higher value indicates better outcome (i.e., higher quality communication) Unit of measurement: units on a scale | Survey items asked of patients at 2-weeks. Not all patients provided data at this time point. | Posted | Median | Inter-Quartile Range | units on a scale | 2 weeks from target visit |
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| Secondary | Patient Health Questionnaire (PHQ-8): Two-Indicator Latent Construct | Patient Health Questionnaire: A self-report measure of depressive symptoms. Eight symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Two-Indicator Latent Construct: Measured with PHQ items 1 & 2 (measurement invariance imposed between groups and over time). Outcome is a latent variable, which is not observable, nor is it a composite score that can be mathematically computed (e.g., as a sum or average) from its measured indicators. Instead, it is an abstract construct that is inferred through a mathematical model; it represents a concept and is, therefore, a hypothetical variable. Theoretical range: unknown; the latent variable is a hypothetical - not an actual - variable Actual range: inapplicable; cannot be determined; this is an indirectly-measured latent variable Higher value indicates worse outcome (i.e., higher level of depressive symptoms) Unit of measurement: scores on a scale | Both survey items answered by patients at baseline, 3-months & 6-months: 117 valid intervention responses; 145 valid control responses. Continuous measure with control group mean fixed at zero. | Posted | Mean | Standard Deviation | scores on a scale | 3 months after target visit |
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| Secondary | Patient Health Questionnaire (PHQ-8): Eight-Item Scale | Patient Health Questionnaire: A self-report measure of depressive symptoms. Eight symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Eight-Item Scale: Sum of responses for the eight symptoms (weighted by 8/7 if only 7 items answered). Theoretical range: 0-24 Actual range: 0-24 Higher value indicates worse outcome (i.e., higher level of depressive symptoms) Unit of measurement: scores on a scale | Survey items asked of patients at baseline. Some intervention and control patients did not provide valid responses on 7+ items. | Posted | Mean | Standard Deviation | scores on a scale | 3 months after target visit |
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| Secondary | Patient Health Questionnaire (PHQ-8): Two-Indicator Latent Construct | Patient Health Questionnaire: A self-report measure of depressive symptoms. Eight symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Two-Indicator Latent Construct: Measured with PHQ items 1 & 2 (measurement invariance imposed between groups and over time). Outcome is a latent variable, which is not observable, nor is it a composite score that can be mathematically computed (e.g., as a sum or average) from its measured indicators. Instead, it is an abstract construct that is inferred through a mathematical model; it represents a concept and is, therefore, a hypothetical variable. Theoretical range: unknown; the latent variable is a hypothetical - not an actual - variable Actual range: inapplicable; cannot be determined; this is an indirectly-measured latent variable Higher value indicates worse outcome (i.e., higher level of depressive symptoms) Unit of measurement: scores on a scale | Both survey items answered by patients at baseline, 3-months & 6-months: 117 valid intervention responses; 145 valid control responses. Continuous measure with control group mean fixed at zero at baseline. | Posted | Mean | Standard Deviation | scores on a scale | 6 months after target visit |
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| Secondary | Patient Health Questionnaire (PHQ-8): Eight-Item Scale | Patient Health Questionnaire: A self-report measure of depressive symptoms. Eight symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Eight-Item Scale: Sum of responses for the eight symptoms (weighted by 8/7 if only 7 items answered). Theoretical range: 0-24 Actual range: 0-24 Higher value indicates worse outcome (i.e., higher level of depressive symptoms) Unit of measurement: scores on a scale | Survey items asked of patients at 6-months. Some intervention and control patients did not provide valid responses on 7+ items. | Posted | Mean | Standard Deviation | scores on a scale | 6 months after target visit |
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| Secondary | Generalized Anxiety Disorder (GAD-7): Two-Indicator Latent Construct | Generalized Anxiety Disorder: A self-report measure of anxiety symptoms. Seven symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Two-Indicator Latent Construct: Measured with GAD items 1 & 2 (measurement invariance imposed between groups and over time). Outcome is a latent variable, which is not observable, nor is it a composite score that can be mathematically computed (e.g., as a sum or average) from its measured indicators. Instead, it is an abstract construct that is inferred through a mathematical model; it represents a concept and is, therefore, a hypothetical variable. Theoretical range: unknown; the latent variable is a hypothetical - not an actual - variable Actual range: inapplicable; cannot be determined; this is an indirectly-measured latent variable Higher value indicates worse outcome (i.e., higher level of anxiety symptoms) Unit of measurement: scores on a scale | Both survey items answered by patients at baseline, 3-months & 6-months: 127 valid intervention responses; 150 valid control responses. Continuous measure with control group mean fixed at zero at baseline. | Posted | Mean | Standard Deviation | scores on a scale | 3 months after target visit |
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| Secondary | Generalized Anxiety Disorder (GAD-7): Seven-Item Scale | Generalized Anxiety Disorder: A self-report measure of anxiety symptoms. Seven symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Seven-Item Scale: Sum of responses for the seven symptoms (weighted by 7/6 if only 6 items answered). (Strong floor effect.) Theoretical range: 0-21 Actual range: 0-21 Higher value indicates worse outcome (i.e., higher level of anxiety symptoms) Unit of measurement: scores on a scale | Survey items asked of patients at 3-months. Some intervention and control patients did not provide valid responses on 6+ items. | Posted | Median | Inter-Quartile Range | scores on a scale | 3 months after target visit |
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| Secondary | Generalized Anxiety Disorder (GAD-7): Two-Indicator Latent Construct | Generalized Anxiety Disorder: A self-report measure of anxiety symptoms. Seven symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Two-Indicator Latent Construct: Measured with GAD items 1 & 2 (measurement invariance imposed between groups and over time). Outcome is a latent variable, which is not observable, nor is it a composite score that can be mathematically computed (e.g., as a sum or average) from its measured indicators. Instead, it is an abstract construct that is inferred through a mathematical model; it represents a concept and is, therefore, a hypothetical variable. Theoretical range: unknown; the latent variable is a hypothetical - not an actual - variable Actual range: inapplicable; cannot be determined; this is an indirectly-measured latent variable Higher value indicates worse outcome (i.e., higher level of anxiety symptoms) Unit of measurement: scores on a scale | Both survey items answered by patients at baseline, 3-months & 6-months: 127 valid intervention responses; 150 valid control responses. Continuous measure with control group mean fixed at zero at baseline. | Posted | Mean | Standard Deviation | scores on a scale | 6 months after target visit |
| |||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Secondary | Generalized Anxiety Disorder (GAD-7): Seven-Item Scale | Generalized Anxiety Disorder: A self-report measure of anxiety symptoms. Seven symptoms, each with ordinal response options, each option associated with a text description ranging from 'Not at all' to 'Nearly every day'. Seven-Item Scale: Sum of responses for the seven symptoms (weighted by 7/6 if only 6 items answered). (Strong floor effect.) Theoretical range: 0-21 Actual range: 0-21 Higher value indicates worse outcome (i.e., higher level of anxiety symptoms) Unit of measurement: scores on a scale | Survey items asked of patients at 6-months. Some intervention and control patients did not provide valid responses on 6+ items. | Posted | Median | Inter-Quartile Range | scores on a scale | 6 months after target visit |
| |||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Secondary | Avoidance of Life-Sustaining Therapies, All Patients | Review of EHR documentation to assess use of three indicators of life-sustaining therapies (LST): admission to an ICU, receipt of CPR, and receipt of mechanical ventilation | Patients who had a target visit and a chart reviewed. | Posted | Count of Participants | Participants | 6-month period following the target visit |
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Secondary | Avoidance of Life-Sustaining Therapies, Patients With Comfort Care Preference | Review of EHR documentation to assess use of three indicators of life-sustaining therapies (LST): admission to an ICU, receipt of CPR, and receipt of mechanical ventilation for patients preferring "comfort" (quality of life over extending life) at the end-of-life | Patients who had a target visit and a chart reviewed. | Posted | Count of Participants | Participants | 6-month period following the target visit |
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Secondary | Palliative Care Consultation, Inpatient Stay - All Patients | EHR documentation of palliative care consultation during an inpatient stay for all patients with target visit and chart abstraction. | Patients who had a target visit and a chart reviewed. | Posted | Count of Participants | Participants | 3-month period following the target visit |
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| Other Pre-specified | Group Differences - Treatment Preference (Adjustment Variable for Outcome Measuring Goal-concordant Care) | Binary variable indicating whether patient's current preference was for life-extension or comfort care | Patients completing 3-month questionnaires. | Posted | Count of Participants | Participants | 3 months after target visit |
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| Other Pre-specified | Group Differences - Stable Treatment Preference (Filter for Subgroup Analysis of Goal-concordant Care) | Binary variable indicating whether patient's treatment preference was stable between target visit (or baseline, if no 2-week questionnaire was returned) and 3 months. | Patients completing 3-month questionnaires. | Posted | Count of Participants | Participants | 3 months after target visit |
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| Secondary | Palliative Care Consultation, Inpatient Stay - Patients Most Likely to Benefit | EHR documentation of palliative care consultation during an inpatient stay for patients who reported preference for "comfort care" (quality of life over extending life) and wanted a discussion. | Patients who had a target visit and a chart reviewed. | Posted | Count of Participants | Participants | 3-month period following the target visit |
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| Secondary | Palliative Care Consultation, Inpatient Stay - All Patients | EHR documentation of palliative care consultation during an inpatient stay for all patients with target visit and chart abstraction. | Patients who had a target visit and a chart reviewed. | Posted | Count of Participants | Participants | 6-month period following the target visit |
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| Secondary | Palliative Care Consultation, Inpatient Stay - Patients Most Likely to Benefit | EHR documentation of palliative care consultation during an inpatient stay for patients who reported preference for "comfort care" (quality of life over extending life) and wanted a discussion. | Patients who had a target visit and a chart reviewed. | Posted | Count of Participants | Participants | 6-month period following the target visit |
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| Secondary | Palliative Care Referral, Outpatient Visit - All Patients | EHR documentation of referral to palliative care services, or discussion about a referral, during an outpatient visit. | Patients who had a target visit and a chart reviewed. | Posted | Count of Participants | Participants | 3-month period following the target visit |
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| Secondary | Palliative Care Referral, Outpatient Visit - Patients Most Likely to Benefit | EHR documentation of referral to palliative care services, or discussion about a referral, during an outpatient visit for patients who reported preference for "comfort care" (quality of life over extending life) and wanted a discussion. | Patients who had a target visit and a chart reviewed. | Posted | Count of Participants | Participants | 3-month period following the target visit |
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| Secondary | Palliative Care Referral, Outpatient Visit - All Patients | EHR documentation of referral to palliative care services, or discussion about a referral, during an outpatient visit. | Patients who had a target visit and a chart reviewed. | Posted | Count of Participants | Participants | 6-month period following the target visit |
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| Secondary | Palliative Care Referral, Outpatient Visit - Patients Most Likely to Benefit | EHR documentation of referral to palliative care services, or discussion about a referral, during an outpatient visit for patients who reported preference for "comfort care" (quality of life over extending life) and wanted a discussion. | Patients who had a target visit and a chart reviewed. | Posted | Count of Participants | Participants | 6-month period following the target visit |
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| Secondary | Palliative Care Consultation and/or Referral - All Patients | EHR documentation of palliative care referral during an outpatient visit and/or palliative care consultation during an inpatient stay. | Patients who had a target visit and a chart reviewed. | Posted | Count of Participants | Participants | 3-month period following the target visit |
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| Secondary | Palliative Care Consultation and/or Referral - Patients Most Likely to Benefit | EHR documentation of palliative care referral during an outpatient visit and/or palliative care consultation during an inpatient stay for patients who reported preference for "comfort care" (quality of life over extending life) and wanted a discussion. | Patients who had a target visit and a chart reviewed. | Posted | Count of Participants | Participants | 3-month period following the target visit |
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| Secondary | Palliative Care Consultation and/or Referral - All Patients | EHR documentation of palliative care referral during an outpatient visit and/or palliative care consultation during an inpatient stay. | Patients who had a target visit and a chart reviewed. | Posted | Count of Participants | Participants | 6-month period following the target visit |
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| Secondary | Palliative Care Consultation and/or Referral - Patients Most Likely to Benefit | EHR documentation of palliative care referral during an outpatient visit and/or palliative care consultation during an inpatient stay for patients who reported preference for "comfort care" (quality of life over extending life) and wanted a discussion. | Patients who had a target visit and a chart reviewed. | Posted | Count of Participants | Participants | 6-month period following the target visit |
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Adverse events were collected for the duration of the study activities: 42 months.
Not provided
Not provided
| ID | Title | Description | Deaths (Affected) | Deaths (At Risk) | Serious Events (Affected) | Serious Events (At Risk) | Other Events (Affected) | Other Events (At Risk) |
|---|---|---|---|---|---|---|---|---|
| EG000 | Clinician Intervention | Received "Jumpstart" feedback forms and education | 0 | 65 | 0 | 65 | ||
| EG001 | Clinician Control | Received/Provided usual care, surveys only | 0 | 67 | 0 | 67 | ||
| EG002 | IP Team Intervention | Received "Jumpstart" feedback forms and education | 0 | 2 | 0 | 2 | ||
| EG003 | IP Team Control | Received/Provided usual care, surveys only | 0 | 2 | 0 | 2 | ||
| EG004 | Patient Intervention | Received "Jumpstart" feedback forms and education | 0 | 249 | 0 | 249 | ||
| EG005 | Patient Control | Received usual care, surveys only | 0 | 288 | 2 | 288 | ||
| EG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education | 0 | 58 | 0 | 58 | ||
| EG007 | Family Member Control | Received usual care, surveys only | 0 | 61 | 0 | 61 | ||
| EG008 | Interviewees | Key informants: Clinicians, Patients and Family Members | 0 | 25 | 0 | 25 |
Not provided
| Term | Organ System | Source Vocabulary | Assessment Type | Notes | Statistical Information |
|---|---|---|---|---|---|
| Subject complaint | Product Issues | Non-systematic Assessment | Complaint and/or concerns with end-of-life / palliative care aspects of survey |
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This study took place in one region of the US and may not generalize to other regions. There may be selection bias among those clinicians and patients who were willing to participate.
Not provided
Not provided
| Title | Organization | Phone | Extension | |
|---|---|---|---|---|
| Dr. J. Randall Curtis | University of Washington | 206-744-3356 | jrc@uw.edu |
| ID | Term |
|---|---|
| D016638 | Critical Illness |
| D002908 | Chronic Disease |
| D003142 | Communication |
| D009362 | Neoplasm Metastasis |
| D008175 | Lung Neoplasms |
| D029424 | Pulmonary Disease, Chronic Obstructive |
| D006333 | Heart Failure |
| D058625 | End Stage Liver Disease |
| D007676 | Kidney Failure, Chronic |
| D001008 | Anxiety Disorders |
| D003863 | Depression |
| ID | Term |
|---|---|
| D020969 | Disease Attributes |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
| D001519 | Behavior |
| D009385 | Neoplastic Processes |
| D009369 | Neoplasms |
| D012142 | Respiratory Tract Neoplasms |
| D013899 | Thoracic Neoplasms |
| D009371 | Neoplasms by Site |
| D008171 | Lung Diseases |
| D012140 | Respiratory Tract Diseases |
| D008173 | Lung Diseases, Obstructive |
| D006331 | Heart Diseases |
| D002318 | Cardiovascular Diseases |
| D017093 | Liver Failure |
| D048550 | Hepatic Insufficiency |
| D008107 | Liver Diseases |
| D004066 | Digestive System Diseases |
| D051436 | Renal Insufficiency, Chronic |
| D051437 | Renal Insufficiency |
| D007674 | Kidney Diseases |
| D014570 | Urologic Diseases |
| D052776 | Female Urogenital Diseases |
| D005261 | Female Urogenital Diseases and Pregnancy Complications |
| D000091642 | Urogenital Diseases |
| D052801 | Male Urogenital Diseases |
| D001523 | Mental Disorders |
| D001526 | Behavioral Symptoms |
Not provided
Not provided
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| Minority Race/Ethnicity |
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| Unknown or Not Reported |
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| Discuss details about getting sicker |
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| Discuss prognosis |
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| Discuss what dying might be like |
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| Involve in EOL treatment decisions |
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| Ask about important things in life |
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| Ask about spiritual or religious beliefs |
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| I'm not ready to talk about care I would want |
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| I don't like to talk about getting very sick |
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| My doctor never seems to have the time |
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| I'd rather concentrate on staying alive |
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| I feel that talking about death can bring it close |
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| I have a living will, so I don't need to talk |
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| My ideas about the kind of care I want change |
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| I have not felt sick enough |
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| I'm not sure which doctor would be caring for me |
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| I have had family or friends who have died |
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| I worry about the quality of my life in the future |
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| I worry that I could be a burden |
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| No response |
|
Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
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|
|
| Patient Intervention |
Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
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|
|
Received "Jumpstart" feedback forms and education
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
| OG002 | IP Team Intervention | Received "Jumpstart" feedback forms and education |
| OG003 | IP Team Control | Received/Provided usual care, surveys only |
| OG004 | Patient Intervention | Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
| OG004 | Patient Intervention | Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
Received/Provided usual care, surveys only
| OG002 | IP Team Intervention | Received "Jumpstart" feedback forms and education |
| OG003 | IP Team Control | Received/Provided usual care, surveys only |
| OG004 | Patient Intervention | Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
Received/Provided usual care, surveys only |
| OG004 | Patient Intervention | Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
Received/Provided usual care, surveys only
| OG002 | IP Team Intervention | Received "Jumpstart" feedback forms and education |
| OG003 | IP Team Control | Received/Provided usual care, surveys only |
| OG004 | Patient Intervention | Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
Received/Provided usual care, surveys only |
| OG004 | Patient Intervention | Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
Received/Provided usual care, surveys only
| OG002 | IP Team Intervention | Received "Jumpstart" feedback forms and education |
| OG003 | IP Team Control | Received/Provided usual care, surveys only |
| OG004 | Patient Intervention | Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
Received/Provided usual care, surveys only |
| OG004 | Patient Intervention | Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
Received/Provided usual care, surveys only
| OG002 | IP Team Intervention | Received "Jumpstart" feedback forms and education |
| OG003 | IP Team Control | Received/Provided usual care, surveys only |
| OG004 | Patient Intervention | Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
Received/Provided usual care, surveys only |
| OG004 | Patient Intervention | Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
Received "Jumpstart" feedback forms and education
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
| Patient Intervention |
Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
Received "Jumpstart" feedback forms and education
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
Received "Jumpstart" feedback forms and education
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
Received "Jumpstart" feedback forms and education
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
Received "Jumpstart" feedback forms and education
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
| Patient Intervention |
Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
Received "Jumpstart" feedback forms and education
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
| Patient Intervention |
Received "Jumpstart" feedback forms and education |
| OG005 | Patient Control | Received usual care, surveys only |
| OG006 | Family Member Intervention | Received "Jumpstart" feedback forms and education |
| OG007 | Family Member Control | Received usual care, surveys only |
| OG008 | Interviewees | Key informants: Clinicians, Patients and Family Members |
|
|
|
|
|
|
|
|
|