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
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.