About the meeting between ME-patients and their next of kin and the public services. Register data, qualitative interviews and a survey will be used to gather new information about this patient group.
Three main topics is singled out in this project.
First, the project aim to provide a thorough understanding of the population affected by myalgic encephalomyelitis syndrome (CFS/ME), the prevalence of the illness, who patients and their families are with respect to central demographic and sosioeceonomic traits, and to assess groups that may be underdiagnosed.
Second, it aims to describe the variation in services received and evaluate to what extent available services fulfills the needs of the patients and their families. This will include health and social services, as well as welfare schemes set up to help patients and their families manage their educations and work-life.
Third, our project aims to describe how the illness impacts the life-situation of patients and next of kin. Central questions to address are how the illness impacts students? ability to keep up with their education and how the work-life and living conditions of patients and their next of kin are affected.
The project is divided into three distinct work packages.
The first work package is a registry study on the level of individuals based on data gathered from four administrative registers in Norway: Statistics Norway (covering demographic, socioeconomic, welfare-services, educational and occupational data), Norwegian Patient Registry (covering data on hospital/specialized health care), IPLOS registry (covering data on home-based or institutional municipal care) and KUHR (covering physicians/GPs).
The second work package is an interview-based study with focus on user experiences and perspectives on public services. The initial stage of this study will be explorative, capturing key issues that will be followed up with more in-depth interviews with chosen patients and households in later stages.
Our third work package is a survey, applying the DePaul Symptoms Questionnaire (DSQ) to explore demographic or socioeconomic biases in existing diagnostic practices and population estimates.