Table 5.
Measures collected to assess outcomes and correlates in the PREPARE NOW study
| Source | |
|---|---|
| Primary Outcomes | |
| Patient ‘Control’, Decision-Making | |
| • Empowerment Score | Q59 |
| • Confidence (self-efficacy) with self care score | Q60 |
| • % Patients deciding to initiate self-care treatment | Q, EHR |
| Medical | |
| • Hospitalizations | EHR, Q |
| Health System Culture | |
| • % Patients with advance care plans or kidney failure treatment preferences broadcast in EHR | EHR |
| Secondary Outcomes | |
| • % Patients with self-care biomedical care plans (PD, Home Hemodialysis, or Transplant referrals) | EHR |
| • % Patients achieving values aligned care within 6 months of kidney failure treatment initiation | Q |
| • Values and preferences documented in EHR | EHR |
| • Emergency dialysis initiation | EHR, Q |
| • Time to kidney failure | EHR, Q |
| • Vascular access (e.g., fistula) in place at hemodialysis initiation | EHR, Q |
| Demographics | |
| • Age, gender, ethnicity/race, education, health insurance status, employment, income, financial well being | EHR¶, Q61§ |
| Physical and Mental Health Status | |
| • Kidney Function (glomerular filtration rate) | EHR62 |
| • Presence and control of kidney disease progression risk factors [blood pressure, blood glucose, lipids, body mass index] | EHR63-67 |
| • Comorbid Health Conditions | EHR68 |
| • Depression, anxiety, need for mental health support | Q69 |
| • Quality of Life | Q70 |
| Self-Care Behaviors | |
| • Self-management, diet, exercise | Q60 |
| • Medication adherence | Q,71 MPR** |
| Nephrology Care | |
| • Duration and frequency of care | EHR, Q |
| • Patient centeredness of care | Q72 |
| Health Literacy and Numeracy | |
| • Health literacy | Q73-75 |
| Decision-Making | |
| • Decisional conflict | Q76 |
| • Preferred involvement in decisions-making | Q77 |
| • Confidence in decision-making (decision self-efficacy) | Q78 |
| • Control (locus of control) | Q79 |
| Medical Care Plans | |
| • Barriers to complex treatment plans | Q |
| Intervention Fidelity, Feasibility and Sustainability | |
| • Kidney Transitions Specialist adherence to protocol | O¶ |
| • Sustainability (RE-AIM)80** | Q, FG$, DI± |
*
Annual assessments over 36 months;
¶
EHR=electronic health record;
§
Q=questionnaire;
¶
O=Observation;
$
FG=Focus group;
±
DI-Directed Interview;
**
MPR=Medication possession ratio from Geisinger Health Plan claims data