Table 3

Variables for aims 1, 2 and 3

MeasureData sourceInstrument timingMeasurement psychometrics (# items)
Aim 1
 DemographicsAge, gender, race and educationPatient and caregiverVisit 1Continuous and dichotomous
 Disease severityForced vital capacity%, DLCO%, Oxygen yes/no, Date of diagnosis, Date of initial centre visitPatientVisit 1Continuous and dichotomous
 Comorbidities# comorbiditiesPatientVisit 1Chart review
 FeasibilityTime, attendancePatient and caregiverAll visits and study closeRecruitment, retention rate
Aim 2 mediating variable
 KnowledgePatient and caregiverVisit 1 and 3Continuous, 14 questions; supportive care Specific Content
 Acceptability of interventionSurveyPatient and caregiverStudy closeContinuous
(Likert 1–10)
Aim 3 outcomes of intervention and evaluation
 StressStressPatient and caregiverPSS
Visit 1 and 3
14 items; Cronbach’s α: 0.89
 Symptom burdenPhysical function, anxiety, depression, fatigue, sleep quality, satisfaction with social role and painPatientPatient   Reported Outcome Measurement Information System-29
Visit 1 and 3
29 items; Cronbach’s α: 0.89–0.95
 Quality of lifeQuality of lifePatientA Tool to Assess  QOL   in IPF
Visit 1 and 3
43 items; Psychometrics unavailable
 Disease preparednessSurveyPatient and caregiver0–10 scale
 Advanced care planning (ACP) completionACPPatient and caregiverVisit 3Two items (yes or no)
Patient completed >50% ACP yes/no
At study close
 QODD (if patient deceased)Quality of dying and deathCaregiverAfter patient death14 items; Cronbach’s α: 0.89
 End of life care trajectoryChart Review SurveyChartAt study closeFormal palliative care
Referral, intensive care unit admission, location of death