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

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Amyotrophic lateral sclerosis (ALS) is characterized by progressive muscular weakness and wasting, eventually leading to respiratory failure and death on average 2-4 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. 


The outcome will provide new knowledge to be used for improving participation of people with ALS and their next of kin and to form the basis for a national ALS quality registry. The gained knowledge will facilitate person-centred care and will be used for continuous learning, quality improvement and management in all healthcare services. 

Principal investigator

Marie Kierkegaard