Effects of Long Term Ventilation Support on the Quality of Life of ALS Patients and Their Families (ALS-LTMV)
Amyotrophic Lateral Sclerosis, Motor Neuron Disease, Nervous System Diseases
About this trial
This is an interventional treatment trial for Amyotrophic Lateral Sclerosis focused on measuring Quality of life, Overall quality of life, Health related quality of life, Disease specific quality of life, Ventilation support, Non-invasive ventilation support, Invasive ventilation support
Eligibility Criteria
Inclusion criteria for patients: A clinical diagnosis of probable ALS according to the revised El Escorial criteria Progression of the illness leading the consulting physician to offer treatment with LTMV Can communicate in Norwegian Inclusion criteria for partners of ALS patients: Partner of a patient with ALS with progression of the illness leading the consulting physician to offer treatment with LTMV Can communicate in Norwegian Inclusion criteria for children: 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 Can communicate in Norwegian Exclusion criteria for patients, partners and children of ALS patients: 1. Potential participants with cognitive impairment or dementia.
Sites / Locations
- Haukeland University HospitalRecruiting
- Akershus University Hospital
- Oslo University HospitalRecruiting
- Stavanger University Hospital
- Universitetssykehuset Nord-Norge
- St. Olavs Hospital
Arms of the Study
Arm 1
Arm 2
Active Comparator
Active Comparator
ALS patients that choose life prolonging treatment with LTMV and their families
ALS patients that decline life prolonging treatment with LTMV and their families