Health care utilization and costs of patients with ME/CFS in Norway, a retrospective registry study

Abstract Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex chronic illness without any known cause or treatment. Diagnostic processes are typically long, and with no established treatment option available, little is known about patients’ total health care utilization and costs. This study analyses health care utilization and costs among patients with ME/CFS in Norway and examines whether they differ from those observed in selected comparison groups. Methods We conducted a retrospective, population-based registry study using linked individual-level data from Norwegian national registries. Information on health care utilization, including hospital treatments, GP contacts and primary health care was collected and linked from national registries. Comparison groups included a random sample of the population and patients diagnosed with Lyme disease, breast cancer or fibromyalgia. Costs were measured as total hospital costs, while costs from general practitioners (GP) and primary care utilization were estimated based on GP tariff, estimated out of pocket payment to GP and national averages for each provided primary care service. Methods included descriptive statistics and regression of costs. Results Patients with ME/CFS utilize health care services less than other comparable diagnoses, but more than a random sample of the population. Health care costs among patients with ME/CFS were almost three times those observed in the random population sample, but were lower than the costs among patients with breast cancer. Conclusions Health care use and costs were particularly high for hospital treatments, while at the same time no clear treatment option is available. Greater attention should be paid to comorbidities among patients with ME/CFS. Further research is needed to determine whether some of their care could be provided more appropriately at other levels of the health care system rather than in hospitals.