RECRUITING

Multicenter HomeVENT: Home Values and Experiences Navigation Track

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

Multicenter HomeVENT: Home Values and Experiences Navigation Track

Quick Facts

Study Start:2024-02-06
Study Completion:2030-12
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT06102330

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:18 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Yes
Standard Ages:ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. 1. English- or Spanish-speaking
  2. 2. Males and females; Age 18 and over.
  3. 3. Parent of a child facing a decision about home ventilation within 30 days. A "parent" will be defined as any self-identified primary caregiver (parents, grandparents, etc).
  4. 4. Provision of signed and dated informed consent form (parent) or completion of oral consent (physician)
  5. 5. Stated willingness to comply with all study procedures and availability for the duration of the study
  6. 6. Access to necessary resources if choose to participate via internet or telephone
  1. 1. Excluding children as they cannot be legal decision-makers
  2. 2. Non-English or Non-Spanish speaking parents, as the intervention website/ videos are only available in those two languages.

Contacts and Locations

Study Contact

Renee D Boss, MD
CONTACT
4106146444
rboss1@jhu.edu
Jennifer Shephard, RN
CONTACT
410-955-5232
jshepar1@jhmi.edu

Principal Investigator

Renee Boss, MD
PRINCIPAL_INVESTIGATOR
Johns Hopkins School of Medicine

Study Locations (Sites)

Johns Hopkins All Childrens Hospital
Tampa, Florida, 33701
United States
Children's Hospital New Orleans
New Orleans, Louisiana, 70118
United States
Johns Hopkins University School of Medicine
Baltimore, Maryland, 21287
United States
Seattle Childrens Hospital
Seattle, Washington, 98145
United States

Collaborators and Investigators

Sponsor: Johns Hopkins University

  • Renee Boss, MD, PRINCIPAL_INVESTIGATOR, Johns Hopkins School of Medicine

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2024-02-06
Study Completion Date2030-12

Study Record Updates

Study Start Date2024-02-06
Study Completion Date2030-12

Terms related to this study

Keywords Provided by Researchers

  • chronic ventilation
  • decision-making

Additional Relevant MeSH Terms

  • Pediatric ALL
  • Respiratory Insufficiency
  • Communication