Community Informed Patient-Centered Research Prioritization for Patients with Tracheostomy and Chronic Ventilator Dependenc

Study Dates

2024-11

Last Modified

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Publisher

PEDSnet

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.

Affiliation(s)

Cincinnati Children's Hospital Medical Center

Funder(s)

This research was made possible through the generous support of the Patient-Centered Outcomes Research Institute .

Provenance

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.

Development Code

Vocabulary

Clinical Subjects Headings

Respiratory Tract Diseases
Lung Diseases
Respiratory Insufficiency
Airway Management
Tracheostomy
Ventilators, Mechanical

Related Concept Set

Related Person

Related Data Quality Result

Related Person

Related Phenotype

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Creative Commons license

a CC-BY Attribution 4.0 license.
Except where otherwised noted, this item's license is described as a CC-BY Attribution 4.0 license.