Community Informed Patient-Centered Research Prioritization for Patients with Tracheostomy and Chronic Ventilator Dependenc
| dc.contributor | Patient-Centered Outcomes Research Institute |
| dc.contributor.author | Pajor, Nate |
| dc.contributor.author | Giambra, Barbara |
| dc.contributor.other | Cincinnati Children's Hospital Medical Center |
| dc.date.accessioned | 2025-06-25T19:31:11Z |
| dc.description | This study is intended to determine a consensus informed list of research priorities ranked by importance and feasibility to improve the health and well-being of children with tracheostomy and ventilator dependence and their families. #### Study Aims 1. Generate a list of community-informed research priorities with the potential to generate new evidence related to children with chronic ventilator dependence that would have immediate impact on patient health outcomes. 2. Redemonstrate the feasibility of a multistep process for identifying community-informed research priorities that could be used by PEDSnet to motivate future projects. #### Cohort Description Snowball sampling of English-speaking patients and family caregivers, clinicians and researchers 18 years of age and older who care for children with tracheostomy and ventilator dependence. ##### Exclusion Criteria: 1. <18 years of age 2. Do not read and write in English ##### Patient Inclusion Criteria: 1. Age 18 years or older 2. Current or prior tracheostomy and mechanical ventilator dependence ##### Family Caregiver Inclusion Criteria: 1. Age 18 years or older 2. Parent or caregiver of a child with current or prior tracheostomy and mechanical ventilator dependence #### Study Design A descriptive study with a modified Delphi design consisting of three rounds of data collection and curation. Round 1 will solicit a wide range of ideas. Round 2 will generate consensus on the ideas (Guiding Coalition). In Round 3, participants will be asked to rank the prioritized ideas on importance and feasibility/modifiability. |
| dc.description.abstract | This project aims to identify priorities for research that will improve health outcomes for children with tracheostomy and chronic ventilator dependence. The projects identified will generate new evidence that can have immediate impact. This area of focus was based on network prioritization of pulmonary diseases for further investigation. |
| dc.identifier.uri | https://hdl.handle.net/20.500.14642/1144 |
| dc.publisher | PEDSnet |
| dc.rights | a CC-BY Attribution 4.0 license. |
| dc.rights.uri | https://creativecommons.org/licenses/by/4.0/ |
| dc.subject | Funding::Grant-Funded Research::PCORI Funded Research |
| dc.subject | Research Methodology::Epidemiological Study::Cross-Sectional Study |
| dc.subject | Data Provenance::PEDSnet Data Source |
| dc.subject.mesh | Respiratory Tract Diseases |
| dc.subject.mesh | Lung Diseases |
| dc.subject.mesh | Respiratory Insufficiency |
| dc.subject.mesh | Airway Management |
| dc.subject.mesh | Tracheostomy |
| dc.subject.mesh | Ventilators, Mechanical |
| dc.title | Community Informed Patient-Centered Research Prioritization for Patients with Tracheostomy and Chronic Ventilator Dependenc |
| dspace.entity.type | Study |
| local.admin.note | PM: Aliyah Jones |
| local.subject.flat | PCORI Funded Research |
| local.subject.flat | Cross-Sectional Study |
| local.subject.flat | PEDSnet Data Source |
| project.startDate | 2024-11 |