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Table 5 Study participant assessment timeline

From: The Transitions to Long-term In Home Ventilator Engagement Study (Transitions to LIVE): study protocol for a pragmatic randomized controlled trial

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      
 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
  1. ***Only completed by intervention group
  2. **Only completed by a subset of participants/ caregivers/ healthcare providers
  3. *Only completed by caregivers completing qualitative interviews