Project period
2023-2025
Funding
The DAM Foundation and Oslo University Hospital HF (OUS)
Project summary
The project will design and develop a user-centred, research- and experience-based e-health intervention that can improve the quality of life for patients with chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) in everyday life. The content of the intervention is based on research carried out on the patient group, on recognized and relevant coping strategies, as well as on the experiences of both patients and health personnel with regard to challenges, needs and relevant strategies for coping with symptoms and the disease. The digital solution will be an application (app) for Smartphone containing elements for registration and management.
CFS/ME is a long-term state of exhaustion with unexplained symptoms, characterized by unpredictability and a fluctuating symptom picture with significantly reduced function. Despite great variation in function within the patient group, everyone who receives the diagnosis has, to some extent, major limitations in their capacity and tolerance for various activity and stimuli before they experience worsening symptoms. There is no medical treatment for CFS/ME, the prognosis is uncertain and it is unclear what can contribute to recovery. Preventing and coping of relapses can have a major impact on patients` quality of life.
Getting CFS/ME involves changes and losses in the patients' lives in many areas. The capacity to participate in work, family, leisure activities or other social life as they did before they became ill is significantly reduced. The disease itself entails a large degree of unpredictability with inexplicable and unpleasant symptom fluctuations, which for many patients create stress, and reduce both function and well-being in everyday life.
In collaboration with patients and healthcare professionals, we will develop a digital intervention for patients with CFS/ME with a focus on the challenges of the disease in everyday life, tailored to the patient group and easily accessible even for the patients with more severe CFS/ME. We will use qualitative interviews and workshops with patients and healthcare personnel to assess needs and preferences.
Collaboration partners
The project is a collaboration between the Norwegian Women's Sanitary Association and DIG (OUS). Design, development and piloting of the solution takes place at DIG and it is led by Elin B Strand. In addition, we have a collaboration with the National Competence Service for CFS/ME led by Ingrid Helland, Rikshospitalet (OUS) and the CFS/ME centre, Aker (OUS).
