CFS / ME is a disorder that affects up to 4 % of the population. CFS / ME is a serious illness with potentially major consequences for the welfare of those affected and their families. The project has three main themes and main objectives.
1. Identify disease incidence and key demographic and socio-economic characteristics of patients and their families. An important sub-goal is to investigate whether there are groups that are underdiagnosed.
2. Describe the healthcare and welfare services CFS / ME patients receive and assess to what extent the services received satisfy the needs of the patients and their families.
3. Gain knowledge on how the disease affects the life situation of the patients and their relatives. We will study how the disease affects the school situation for younger patients and how the working life situation and living conditions of adult patients and relatives are affected.
In the study we collect data in three ways: register data, in-depth interviews and a survey. By linking register data from Statistics Norway, the Norwegian Patient Register (NPR), and the Municipal Patient and User Register (KPR), we will gain knowledge of what characterizes households affected by ME, both regarding to consumption of health care and social security benefits. Data delivery has taken longer than planned, partly due to a long processing queue. We received the data in June 2021 and as of September 2021 we are analysing the data. Preliminary findings will be presented at FHI and the ME association's conference in November.
The target group for the survey is persons suffering from fatigue and who may qualify for an ME diagnosis. The survey's questions are based on existing validated instruments. We have used a technique called Respondent-Driven Sampling (RDS) which means that people who are in the target group respond to it and forward the invitation to participate to others they consider to be within the target group. RDS is described to be a suitable method when one does not have complete overview of the population. The survey was sent to the first so-called "seeds" in August 2020. The survey was open throughout 2020, and 660 respondents have answered the survey.
Using RDS has rarely been done in Norway before, and it has worked very well in this well-networked patient group. An article describing the use of RDS is currently being finalised. In the survey, respondents scored themselves on an instrument for preliminary diagnosis of ME, called the DePaul Symptoms Questionnaire. Analyses show that this provides knowledge about the prevalence of ME, beyond what is found in register data. Another preliminary finding is that good collaboration between GPs and patients seems to reduce the consumption of health services.
During 2019 we conducted interviews with over 20 households across the country. This includes interviews with both sick and relatives, children and adults. The interviews give us important knowledge about how ME affects the life situation of both the sick person and their relatives. They also give us in-depth knowledge of how they perceive the services they receive, or the lack thereof. We are conducting analyses, and our preliminary findings bear many resemblances with previous qualitative studies in the field.
In spring 2020 two group interviews with next of kin to the sickest ME-patients were conducted. The plan was to conduct five-six group interviews during spring 2020. However, due to the corona situation, we had to postpone them. In June 2021, we conducted the postponed interviews. They were conducted on Teams, and the informants came from all over the country. We did five small group interviews and one individual interview. A total of 18 people were interviewed. The informants shared strong stories about what it is like to be a relative of very ill people. The interviews have not yet been analysed, but topics that appear to be particularly central are the experience of a heavy responsibility, to be a coordinator for the sick person, and major consequences for one's own everyday life, including work participation.
We work in parallel with several articles based on the individual interviews. These include the "mismatch" between what ME patients need and what kind of services they receive, households affected by ME's encounters with welfare schemes, and their lack of adaptation to patients' needs, and the role of next of kin.
The remaining data collection is a follow-up of a sample of households of those interviewed in 2019. We have selected the households that had sick children to follow up on this topic in particular; that is, how families with children experience the encounter with the services, including schools. The sample consists of ten households with a total of 13 sick children. We will do interviews via a digital platform with parents and possibly the children if they are healthy enough. We plan to do the interviews in January 2022.
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 and their 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.