Life-dependent Home Mechanical Ventilation

Launched by RIGSHOSPITALET, DENMARK · Nov 21, 2023

Keywords

ClinConnect Summary

This is an observational study in Denmark that aims to understand life with life-dependent home mechanical ventilation (HMV). It looks at how it works when a trained respiratory patient caregiver (tPCG) supervises the ventilation at home, whether it’s done invasively through a tracheostomy or non-invasively with a mask. The researchers want to learn about the real-life experiences and challenges from patients, their families, and the caregivers, not to test a new treatment.

Who can participate and what you would do: adults 18 years and older who are on HMV and have a trained caregiver (and their relatives plus the caregiver) in the Respiratory Center East in Denmark are eligible. About 200 people are planned to be enrolled, and participation is by invitation. The main thing researchers will measure is a questionnaire about how severe respiratory problems feel for the patient, asked within the last week. The study is led by Rigshospitalet in Copenhagen, at the Department of Anaesthesia, Pain and Respiratory Support.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Patient Age \> 18 years Has trained patient care givers to surveil the respiratory treatment and working on the responsibility of the Respiratory Center East
• • Parent Age \> 18 years Has a child less than 18 years old with tPCG, working on the responsibility of the Respiratory Center East, to surveil the home-mechanical ventilation
• Other relative:
• • Age \> 18 years Involved in the treatment or support of a relative with tPCG, working on the responsibility of the Respiratory Center East, to surveil the home-mechanical ventilation
• • Trained patient caregivers (tPCG) Age \> 18 years Employed by an external agency or by the patient (BPA) to surveil home-mechanical ventilation Certified as tPCG working on the responsibility of the Respiratory Center East
• Exclusion Criteria:
• • No informed consent to participate