Studies how long-term breathing support affects life for people with ALS and families
Compares quality of life for ALS patients and families with or without breathing support.
Plain-language title generated from the registry record
Registry title: Effects of Long Term Ventilation Support on the Quality of Life of ALS Patients and Their Families
Key facts
- Where
- Bergen, Bodø, Kristiansand, Lørenskog, Oslo, Sarpsborg, Stavanger, Tromsø, and Trondheim, NorwaySee the 9 sites
AI summary: who the study is looking for
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The trial is looking for people with ALS who are offered long-term ventilation support, their partners, and their children aged 8 or older. It asks about quality of life before and after ventilation starts.
- Age
- Patients and partners: not stated in the record. Children: 8 years and older.
- Sex
- All sexes can join.
- Disease stage
- Patients have probable ALS (revised El Escorial criteria). Their illness has progressed so that the doctor offers long-term mechanical ventilation support.
Main reasons for not taking part
- Cognitive impairment or dementia
- Cannot communicate in Norwegian
Read by machine on 9 November 2026.
Where in Norway
- Haukeland University HospitalBergen, NorwayTaking people
- Nordland Hospital BodøBodø, NorwayTaking people
- Sørlandet Hospital TrustKristiansand, NorwayTaking people
- Akershus University HospitalLørenskog, NorwayTaking people
- Oslo University HospitalOslo, NorwayTaking people
- Østfold Hospital KalnesSarpsborg, NorwayNot yet recruiting
- Stavanger University HospitalStavanger, NorwayTaking people
- Universitetssykehuset Nord-NorgeTromsø, NorwayTaking people
- St Olavs HospitalTrondheim, NorwayTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Haukeland University Hospital
- Trial code
- NCT05744310
- Record updated
- 21 September 2026
- Original description
Amyotrophic lateral sclerosis (ALS) is a serious rapidly progressive disease of the nervous system. The average survival from the time of diagnosis is two to three years. The patient physical and psychological sufferings in ALS are immense, and apart from Riluzole, there is no effective treatment. Care of advanced ALS have an estimated cost of 4-8 million NOK per year. Perhaps the most challenging topic of ALS care is the decision to extend ventilation support into the stages of disease that require treatment both during day and night. In these cases, treatment is clearly life-sustaining and although quality of life may be maintained, the burden of caregiving imposed upon family or health care workers is huge, regardless of tracheostomy (TIV) or non-invasive (NIV) modality.Read full original descriptionShow less
Effects of Long Term Ventilation Support on the Quality of Life of ALS Patients and Their Families
Amyotrophic lateral sclerosis (ALS) is a serious rapidly progressive disease of the nervous system. The average survival from the time of diagnosis is two to three years. The patient physical and psychological sufferings in ALS are immense, and apart from Riluzole, there is no effective treatment. Care of advanced ALS have an estimated cost of 4-8 million NOK per year. Perhaps the most challenging topic of ALS care is the decision to extend ventilation support into the stages of disease that require treatment both during day and night. In these cases, treatment is clearly life-sustaining and although quality of life may be maintained, the burden of caregiving imposed upon family or health care workers is huge, regardless of tracheostomy (TIV) or non-invasive (NIV) modality.
The present study is a longitudinal questionnaire study in Norway measuring overall quality of life, health-related quality of life, and disease-specific quality of life in ALS patients, partners and children before and after the introduction of life sustaining ventilation support. The investigators aim to increase the knowledge on how life-sustaining ventilation support with NIV or TIV affects the quality of life in ALS patients, life partners and children. The results from the study may provide crucial information for clinicians and patients on one of the most difficult ethical issues of ALS treatment. The investigators anticipate that this information will facilitate a shared decision making processes, weighing benefits and disadvantages in a wider perspective.
Inclusion: 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; Partner of a patient with ALS with progression of the illness leading the consulting physician to offer treatment with LTMV; Can communicate in Norwegian; 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: Potential participants with cognitive impairment or dementia.