Table 3.

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