Individuals and families affected by ME/CFS: Population characteristics, service use and needs

Project description

Three main topics are singled out in this project. First, the project aims to provide a thorough understanding of the population affected of ME/CFS, 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 to evaluate to what extent available services fulfill the needs of patients and their carers. This includes health and social services, as well as welfare schemes set up to support patients and their families in managing their education and work-life.

Third, the project aims to describe how the illness impacts the living situation of patients and their relatives. Central questions that will be addressed are how the illness impacts students and their ability to obtain an education, and how the work-life and overall living conditions of patients and their families 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/specialised health care), IPLOS registry (covering data on home-based or institutional municipal care) and KUHR (covering physicians). The second work package is an interview-based study with a focus on user experiences and perspectives on public services rendered. The initial stage of this study will be explorative, capturing key issues that will be followed up with more in-depth interviews with selected patients and households in later stages. The 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.

Description adapted from project website: see link above.