Living with pulmonary arterial hypertension - the burden of disease from the patient- and societal perspective

Pulmonary arterial hypertension (PAH) means high blood pressure in the pulmonary circulation. PAH is a serious and chronic disease that affects people of all ages. Early symptoms are non-specific and easily dismissed as lack of exercise or laziness by both the healthcare provider as well as the patients themselves and their next of kin. This often leads to a significant delay from the onset of symptoms to a correct diagnosis.
Our study aim to understand the patient's journey in the health care system before and after the PAH diagnosis and also, contribute new knowledge about the clinical and health economic situation for the patients with PAH and the surrounding society. This will help shape future care, both before and after diagnosis.
The study is based on de-identified information from the Swedish health registries, population registry and the Social Insurance Agency. Data from five years before and five years after the diagnosis for patients with PAH are compared with an age, sex and geographically matched control population from the population registry.
One of the main goals is to develop a tool for primary care so that a diagnosis can be made earlier in the course of the disease. A better coordination both within the health care system as well as with the social insurance system after diagnosis will reduces the disease burden and costs of living with PAH for the patient, health care and society.