Table 5.

Study participant assessment timeline

Tool	Time	Baseline	Every 4 weeks	Monthly	Any clinical encounter	3 month	6 months	12 months
Participants (with/without caregiver assistance)
Demographic/baseline data	10–15 min	X
Ambulatory and Home Care Record (Hybrid) [27,28 ]	10–20 min	X	X
Euro-Quality of Life- 5D-5L Dimensions Scale [32,33] (5D-Y for kids)	10–15 min	X					X	X
Qualitative interviews**	60 min						X	X
S3-NIV*** [6]	5 min	X		X
Pearlin Self-Mastery Scale	5 min	X				X	X	X
VentSS***			X
Caregivers
Demographic data	5 min	X
Qualitative Interviews**	60 min						X	X
Family Experiences with Coordination of Care	20–30 min						X	X
Zarit Burden Interview	5–10 min	X					X	X
Healthcare providers
Care Coordination Measurement Tool	< 5 min				X
Qualitative interviews**	60 min						X	X

***Only completed by intervention group

**Only completed by a subset of participants/ caregivers/ healthcare providers

*Only completed by caregivers completing qualitative interviews