Impact of long-term ventilation support on ALS patients and their families

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This study investigates the effects of long-term mechanical ventilation support on the quality of life for patients with Amyotrophic Lateral Sclerosis (ALS) and their families. It involves a longitudinal questionnaire approach to assess overall, health-related, and disease-specific quality of life among ALS patients, their partners, and children. The study aims to understand the balance between life-sustaining treatment and the caregiving burden experienced by families. Participants will be recruited from various hospitals in Norway, focusing on those who can communicate in Norwegian.

Why it matters

Who can join: the full rules

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.

Where it's running

• Nordland Hospital Bodø
  Bodø, Nordland, Norway Recruiting
• Sørlandet Hospital Trust
  Kristiansand, Vest Agder, Norway Recruiting
• Haukeland University Hospital
  Bergen, Norway Recruiting
• Akershus University Hospital
  Lørenskog, Norway Recruiting
• Oslo University Hospital
  Oslo, Norway Recruiting
• Stavanger University Hospital
  Stavanger, Norway Recruiting

Study contacts

• Principal investigator: Ole-Bjørn Tysnes — Haukeland University Hospital
• Study coordinator: Ole-Bjørn Tysnes
• Email: ole-bjorn.tysnes@helse-bergen.no
• Phone: + 47 55975063

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.