Pulmonary arterial hypertension (PAH) is a rare and serious disease that causes high blood pressure in the blood vessels that carry blood from the heart to the lungs. Patients often face a long and complex journey from the first symptoms to an accurate diagnosis. There is limited research on the patient pathways, and the barriers patients encounter from the onset of symptoms through diagnosis and treatment.
The goal of the project
The aim is to identify bottlenecks and factors that affect:
- the time required to reach the correct diagnosis
- access to treatment and follow-up care
- patients’ experience of the healthcare they receive.
The study examines both the patient and healthcare system perspectives and uses qualitative methods involving healthcare professionals, patients, and caregivers.
Interviews with healthcare professionals
Interviews with healthcare professionals are used to understand how the patient pathway is organized, including the actors involved, their roles and responsibilities, and potential bottlenecks.
The patient perspective is explored through repeated interviews and patient diaries, providing insight into individual journeys and experiences over time. Workshops with patients and caregivers complement these data by identifying significant positive and negative experiences along the journey.
Mapping the patient pathway
The patient pathway and individual patient journeys are modeled and visualized using the Customer Journey Modeling Language (CJML). By bringing together patient and healthcare system perspectives, the study aims to identify critical factors and bottlenecks, including barriers to timely diagnosis, treatment, and access to healthcare services.