Collaborative Learning to Achieve Refined Interventions for Emory: Kidney Disease

Composite measure of time to transition to Kidney Replacement Therapy (KRT) using a central venous catheter (CVC) over the course of the study period

Composite measure of time to death over the course of the study period. A record of death in the electronic medical record (EMR), and the date of death will be recorded. If the data is not available in EMR, national death statistics will be checked, and the patient's family will be asked.

Composite measure of time to ESKD diagnosis over the course of the study period. Progression to ESKD will be analyzed using monthly data collected from the EMR, capturing each participant's progression characterized by a significant loss of kidney function (defined as a glomerular filtration rate (GFR) of less than 15 mL/min) requiring KRT. Time to event will be calculated for all participants at the end of the follow-up period.

Composite measure of time to referral for optimal KRT start over the course of the study. This includes referral for vascular surgery, preemptive kidney transplant evaluation, and/or home dialysis initiation. Data will be collected monthly from the EMR.

Number of participants who transitioned to Kidney Replacement Therapy (KRT) with the use of a central venous catheter (CVC) during the course of the study.

Mortality during study participation.

Continuous measure of nephrology appointment adherence measured as the ratio of # appointments attended to # appointments scheduled during the course of the study. At the end of the follow-up period for all participants, the researchers will calculate the proportion of appointments attended as a measure of appointment adherence. This will be captured from the Emory Healthcare appointment-keeping system.

Self-reported occurrence of physical and emotional symptoms commonly experienced in individuals with CKD. Participants will complete a 29-item CKD Symptom Burden questionnaire that captures the frequency at which patients experience symptoms. Response options are on a 4-point scale (0 'never' to 4 'every day'). The summed total score ranges from 0 to 29. The greater the frequency of symptoms, the poorer the health-related and self-perceived quality of life.

Participants will complete a 10-item phone survey that assesses their perceived quality of life. Responses are recorded on a 5-point scale, with total scores ranging from 10 to 50; higher scores indicate better self-reported health-related quality of life.

Patient activation will be measured using the Patient Activation Measure (PAM), completed by phone. PAM is a validated self-reported questionnaire designed to assess an individual's knowledge, skills, and confidence in managing their well-being. It captures participants' agreement with 22 statements regarding their self-efficacy in maintaining health, measured on a scale from "Strongly Disagree" to "Strongly Agree." The response options are on a 4-point scale. Scores range from 0 to 100, with higher scores indicating greater activation.

Decisional conflict will be measured using the Decisional Conflict Scale (DCS). The DCS measures personal perceptions of uncertainty in choosing options. The survey will be conducted over the phone to capture the level of agreement a participant has with 16 statements regarding their ability to make an informed decision, measured on a scale from "Strongly Disagree" to "Strongly Agree." The response options are on a 5-point scale. Scores can range from 16 to 70. Higher Scores indicate higher decisional conflicts.

Medical mistrust organization will be measured using the Medical Mistrust Index adapted to address general mistrust of healthcare providers. Participants will answer the questions over the phone. Questions will capture their level of agreement with seven statements regarding healthcare organizations. Responses are measured on a 4-point scale, ranging from "Strongly Disagree" to "Strongly Agree". Scores can range from 7 to 28.

DMS Scale is a validated, 7-item, 5-point Likert survey (1=never, 5=almost always) adapted from the Everyday Discrimination Scale to measure patients' self-reported experiences of, or perceptions of, mistreatment by healthcare providers due to factors like race, sex, or age. It assesses, for instance, if a patient is treated with less courtesy, respect, or receives poorer service, ranging from 7 to 35. There is no single "official" cutoff score that defines the presence of discrimination for everyone, as the DMS Scale is designed to measure the frequency of experiences on a continuous spectrum, with higher scores indicating more frequent experiences of discrimination.

To measure participants' CKD treatment knowledge, they will complete a 9-item yes/no questionnaire over the phone. The research team will count the number of correct responses, resulting in a score ranging from 0 to 9.

KRT knowledge will be measured using the Rotterdam Renal Replacement Knowledge test. Participants will complete the 21-item test over the phone, assessing their understanding of renal replacement therapy. The research team will count the correct responses, allowing scores to range from 0 to 21. Higher scores suggest a better understanding of KRT, indicating preparedness to make informed decisions about treatment options.

Shared decision-making will be measured using the Shared Decision-Making Q-9. Participants will respond by phone to 16 statements regarding their ability to make informed decisions, using a 5-point scale from "Strongly Disagree" to "Strongly Agree." Scores will range from 16 to 80.

Interpretation of Scores:

Low Score (16-40): Indicates poor shared decision-making, suggesting the patient may feel uninformed or not involved in their care.

Moderate Score (41-60): Reflects a moderate level of shared decision-making, indicating some collaboration occurs but that improvements are needed.

High Score (61-80): Suggests strong shared decision-making, where patients feel well-informed and actively involved in their healthcare decisions.

The BRIEF tool is a four-question screening test where clinicians can ask patients four questions to determine their health literacy level (the degree to which one can read, understand, exchange, and use health information and resources). Each item is worth 1 to 5 points depending on the response (1=Always, 5=Never). The values for the four responses are added for a total score, which ranges from a minimum of 4 to a maximum of 20.

Interpretation of Scores:

Limited (4 -12): Not able to read most low-literacy health materials; will need repeated oral instructions; materials should have illustrations or videotapes. Will need low literacy materials; may not be able to read a prescription label.) Marginal (13 - 16): Will be able to read and comprehend most patient education materials.

Adequate (17 - 20): Will be able to read and comprehend most patient education materials.

Health-Related Social Needs (HRSN) Identified via the Accountable Health Communities Health-Related Social Needs (AHC HRSN) Screening Tool. HRSNs will be identified using the AHC HRSN Screening Tool, which includes five core domains (housing instability, food insecurity, transportation problems, utility help needs, interpersonal safety). Outcomes reflect the number of participants with one or more HRSNs.

The Patient Health Questionnaire-9 (PHQ-9) is a self-administered 9-item tool used to screen, diagnose, and monitor the severity of depression in adults. It assesses symptoms over the past two weeks based on the Diagnostic and Statistical Manual of Mental Disorders (DSM) criteria, with scores ranging from 0 to 27. A score of >=10 typically indicates moderate depression, requiring further clinical evaluation.

Interpretation of Scores:

0-4: Minimal or no depression (monitor) 5-9: Mild depression (use clinical judgment) 10-14: Moderate depression (active treatment) 15-19: Moderately severe depression 20-27: Severe depression

The Generalized Anxiety Disorder scale-7 (GAD-7) is a seven-item diagnostic tool validated in both the primary care setting and the general population, with reporting scores from 0 to 3 on all questions. It investigates how often the patient has been bothered by seven different symptoms of anxiety during the last two weeks, with response options such as " not at all," " several days '," more than half the days," and " nearly daily " scored as 0, 1, 2, and 3, respectively. The scores of 5, 10, and 15 are taken as cut-off points for mild, moderate, and severe anxiety, respectively.

Interpretation of Scores:

0-4: minimal anxiety 5-9: mild anxiety 10-14: moderate anxiety 15-21: severe anxiety