Variables for aims 1, 2 and 3
| Measure | Data source | Instrument timing | Measurement psychometrics (# items) | |
| Aim 1 | ||||
| Demographics | Age, gender, race and education | Patient and caregiver | Visit 1 | Continuous and dichotomous |
| Disease severity | Forced vital capacity%, DLCO%, Oxygen yes/no, Date of diagnosis, Date of initial centre visit | Patient | Visit 1 | Continuous and dichotomous |
| Comorbidities | # comorbidities | Patient | Visit 1 | Chart review |
| Feasibility | Time, attendance | Patient and caregiver | All visits and study close | Recruitment, retention rate |
| Aim 2 mediating variable | ||||
| Knowledge | Patient and caregiver | Visit 1 and 3 | Continuous, 14 questions; supportive care Specific Content | |
| Acceptability of intervention | Survey | Patient and caregiver | Study close | Continuous (Likert 1–10) |
| Aim 3 outcomes of intervention and evaluation | ||||
| Stress | Stress | Patient and caregiver | PSS Visit 1 and 3 | 14 items; Cronbach’s α: 0.89 |
| Symptom burden | Physical function, anxiety, depression, fatigue, sleep quality, satisfaction with social role and pain | Patient | Patient Reported Outcome Measurement Information System-29 Visit 1 and 3 | 29 items; Cronbach’s α: 0.89–0.95 |
| Quality of life | Quality of life | Patient | A Tool to Assess QOL in IPF Visit 1 and 3 | 43 items; Psychometrics unavailable |
| Disease preparedness | Survey | Patient and caregiver | 0–10 scale | |
| Advanced care planning (ACP) completion | ACP | Patient and caregiver | Visit 3 | Two items (yes or no) Patient completed >50% ACP yes/no |
| At study close | ||||
| QODD (if patient deceased) | Quality of dying and death | Caregiver | After patient death | 14 items; Cronbach’s α: 0.89 |
| End of life care trajectory | Chart Review Survey | Chart | At study close | Formal palliative care Referral, intensive care unit admission, location of death |