HomeVENT: Supporting Families Facing Decisions About Home Ventilation
This study, called HomeVENT, is testing a web-based tool designed to help families and doctors make decisions about a child needing chronic home ventilation (a machine to help with breathing at home). The tool, called the HomeVENT decision support tool, shares different family experiences to help you feel more prepared and to improve how families and doctors make these important decisions together. We are looking for parents of children who need to decide about home ventilation within 30 days, as well as their doctors. Half of the families will use the HomeVENT tool, and the other half will receive usual care. We will ask families questions at 1, 6, and 12 months to see if the tool helps.
- Study design
- This is an interventional study planning to enroll 600 participants across multiple centers. Participants will be assigned to either receive the HomeVENT decision support tool or usual care.
- What's involved
- If you are in the intervention group, you will view the study website with staff and answer questions for up to 2 hours. All families will be interviewed at 1, 6, and 12 months after joining, with each interview lasting 15-30 minutes.
- Compensation
- Not stated in the trial record.
- Follow-up
- Participants will be followed for 12 months after enrollment, with interviews at 1, 6, and 12 months.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
Multicenter HomeVENT: Home Values and Experiences Navigation Track
At a glance
Conditions
NCT06102330
Where you'd take part
This study runs at 4 sites. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.
Children's Hospital New Orleans
New Orleans, Louisianastudy coordinator listed
Recruiting
Johns Hopkins All Childrens Hospital
Tampa, Floridastudy coordinator listed
Recruiting
Johns Hopkins University School of Medicine
Baltimore, Marylandstudy coordinator listed
Recruiting
Seattle Childrens Hospital
Seattle, Washingtonstudy coordinator listed
Recruiting
Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.
Study leadership
- Renee Boss, MD · PRINCIPAL_INVESTIGATOR · Johns Hopkins School of Medicine
Who to contact
Opens a ready-to-send draft in your own email app — review before sending.
What this trial measures
- Preparedness for Decision Making among parents making decisions about home ventilation as assessed by the Preparedness for Decision Making scale.1 month
The Preparedness for Decision Making scale has a possible score range of 0-100. Higher score means more prepared.
- Shared Decision Making among parents making decisions about home ventilation as assessed by the CollaboRATE-Parent version scale1 month
The CollaboRATE-Parent version scale is a 3 item measure. Score range 0-27. Higher score means better shared decision making.
- Shared Decision Making among parents making decisions about home ventilation as assessed by the Consumer Assessment of Healthcare Providers and Systems (CAHPS-SDM) survey1 month
The Consumer Assessment of Healthcare Providers and Systems scale is an 8 item measure. Score range 0-23. Higher score means better shared decision making.
- Shared decision making about home ventilation for physicians as assessed by the Shared Decision Making Questionnaire - Physician (SDM-Q-DOC) version1 month
The Shared Decision Making Questionnaire - Physician questionnaire is a 9 item measure. Score range 0-54. Higher score meaning better shared decision making.