Principal Investigators

    Lotta Widén Holmqvist


    Karolinska Institutet

    Contact information of lead PI



    Title of project or programme

    To live with amyotrophic lateral sclerosis (ALS): health-related quality of life, and use and satisfaction with care during the course of the disease

    Source of funding information

    Swedish Research Council

    Total sum awarded (Euro)

    € 228,509

    Start date of award


    Total duration of award in years


    The project/programme is most relevant to:

    Motor neurone diseases


    Research Abstract

    Amyotrophic lateral sclerosis (ALS) is characterized by progressive muscular weakness and wasting, eventually leading to respiratory failure and death on average 2-3 years after diagnosis. There is no cure and clinical management focus on care to alleviate symptoms and to improve survival and health-related quality of life (HRQL). The aims of the project are to describe and explore use and satisfaction with care, factors associated with HRQL in people with ALS and their next of kin during the course of disease, and experiences on mechanical ventilation, in order to facilitate person-centred care. The outcome will also be used for choice of variables in a national ALS quality registry. The project has a longitudinal design with repeated data collections during home visits every 6 months up to 3 years after enrolment. Structured interviews are used for gathering information on socio-demographic and disease-related factors, and questionnaires for information on HRQL, disease severity, cognition, depression, fatigue, coping capacity and burden of care. Qualitative interviews are used for information on experiences of mechanical ventilation. In addition, a questionnaire based on the taxonomy of Ware is used for evaluation of satisfaction with care and healthcare services. Information on use of care and healthcare services is collected through central registers. Descriptive statistics, regression models and content analysis will be used for data presentation and analyses.

    Lay Summary

    Further information available at:

Types: Investments > €500k
Member States: Sweden
Diseases: Motor neurone diseases
Years: 2016
Database Categories: N/A
Database Tags: N/A

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