Effects of Long Term Ventilation Support on the Quality of Life of ALS Patients and Their Families

Launched by HAUKELAND UNIVERSITY HOSPITAL · Feb 21, 2023

Keywords

ClinConnect Summary

This clinical trial is studying how long-term ventilation support affects the quality of life for patients with Amyotrophic Lateral Sclerosis (ALS) and their families. ALS is a serious disease that affects the nervous system and usually progresses quickly, leading to significant physical and emotional challenges. The trial aims to gather information from patients, their partners, and children to understand how using life-sustaining ventilation support—either through a tracheostomy (a surgical opening in the neck) or non-invasive methods—impacts their daily lives and overall well-being. This research is important because it can help doctors and families make better decisions about treatment options during the later stages of ALS.

To participate in this study, patients must have a confirmed diagnosis of ALS and be at a stage where they are being offered long-term ventilation support. Their partners and children aged 8 and older can also join if they can communicate in Norwegian. Participants will be asked to fill out questionnaires about their quality of life before and after starting the ventilation support. This will help researchers understand the benefits and challenges of this treatment, ultimately supporting families in making informed choices about care.

Gender

ALL

Eligibility criteria

• Inclusion criteria for patients:
• • 1. A clinical diagnosis of probable ALS according to the revised El Escorial criteria
• • 2. Progression of the illness leading the consulting physician to offer treatment with LTMV
• • 3. Can communicate in Norwegian
• Inclusion criteria for partners of ALS patients:
• • 1. Partner of a patient with ALS with progression of the illness leading the consulting physician to offer treatment with LTMV
• • 2. Can communicate in Norwegian
• Inclusion criteria for children:
• • 1. Children from 8 years and older having a parent who suffers from ALS with progression of the illness leading the consulting physician to offer treatment with LTMV
• • 2. Can communicate in Norwegian
• Exclusion criteria for patients, partners and children of ALS patients:
• • 1. Potential participants with cognitive impairment or dementia.