Multicenter HomeVENT: Home Values and Experiences Navigation Track

Part of paid clinical trials in Tampa, Florida.

Sponsor
Johns Hopkins University
Study ID
NCT06102330
Status
Recruiting
Apply to this trial

Conditions

  • Communication
  • Pediatric ALL
  • Respiratory Insufficiency

Eligibility Criteria

Sex
ALL
Age
18 Years - N/A
Healthy Volunteers
Accepted

Interventions

  • HomeVENT decision support tool — OTHER
    Web-based decision support tool that describes diverse family experiences with making decisions about pediatric chronic home ventilation

Study Details

This is a multicenter study to test a decision-making support process for families and clinicians facing decisions about chronic home ventilation for a child. The investigators hypothesize that the intervention will increase family preparedness for decision-making and will improve clinician-family shared-decision making. Half of families will be assigned to "usual care" arm and half to the "intervention" arm. Intervention families will view the study website with study staff and will answer questions related to website content. All families will be interviewed and surveyed at 1, 6 and 12 months after enrollment. Each family will designate 1-2 physician involved in the decision about home ventilation; each physician will be interviewed and surveyed at 1 month.

Key Dates

Start date
Feb 6, 2024
Status verified
Jul 2025
Primary completion
Dec 31, 2029
Completion
Dec 31, 2030

Study Design

Enrollment
600 participants (estimated)
Allocation
NON_RANDOMIZED
Intervention model
SEQUENTIAL
Primary purpose
SUPPORTIVE_CARE

Arms

  • No Intervention: Usual Care
    No alteration in care. Will interview families and clinicians at 1 month, and families again at 6 and 12 months
  • Experimental: Intervention
    Will review a web-based decision-making tool with families and simultaneously interview family regarding website topics. Will interview families and clinicians at 1 month, and families again at 6 and 12 months

Primary Outcome Measure

Preparedness for Decision Making among parents making decisions about home ventilation as assessed by the Preparedness for Decision Making scale. [ Time Frame: 1 month ]

Central Contacts

Locations (4)

FacilityCityStateZIPSite coordinators
Johns Hopkins All Childrens HospitalTampaFlorida33701
Nicholas Jabre, MD
[email protected]
717-215-6522
Haley Sivilich
[email protected]
Joana Machry (SUB_INVESTIGATOR)
Children's Hospital New OrleansNew OrleansLouisiana70118
Carrie Henderson, MD
[email protected]
504-899-9511
Emily Moran
[email protected]
5048975377
Johns Hopkins University School of MedicineBaltimoreMaryland21287
Renee D Boss, MD
[email protected]
410-614-6444
Jennifer Shepard, RN
[email protected]
4109555232
Emily Boss, MD (SUB_INVESTIGATOR)
Seattle Childrens HospitalSeattleWashington98145
Benjamin Wilfond, MD
[email protected]
206-884-8355
Abril Beretta
[email protected]
Holly Vo, MD (SUB_INVESTIGATOR)

Find similar trials in Tampa, FL

By research site
Johns Hopkins All Childrens Hospital· Tampa, FLChildren's Hospital New Orleans· New Orleans, LAJohns Hopkins University School of Medicine· Baltimore, MDSeattle Childrens Hospital· Seattle, WA

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