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

RecruitingNAAges 8 Years - anyAllHaukeland University Hospital
NCT05744310 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

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-relate

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📋 Eligibility rules (as published)
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.
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What it tests

  • Long term mechanical ventilation support
  • No long term mechanical ventilation support
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Where

9 sites
Nordland Hospital Bodø
Bodø, Norway
Sørlandet Hospital Trust
Kristiansand, Norway
Haukeland University Hospital
Bergen, Norway
Akershus University Hospital
Lørenskog, Norway
Oslo University Hospital
Oslo, Norway
Østfold Hospital Kalnes
Sarpsborg, Norway
Stavanger University Hospital
Stavanger, Norway
Universitetssykehuset Nord-Norge
Tromsø, Norway

…and 1 more on ClinicalTrials.gov.

🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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