Patient journey map for aPAP presented at CHEST 2024
Individuals living with autoimmune pulmonary alveolar proteinosis (aPAP) experience complex and often frustrating journeys through diagnosis and treatment, according to a poster at the 2024 CHEST Annual Meeting that presented the development of a Patient Journey Map (PJM), highlighting the inconsistent diagnostic pathways, the emotional and financial burdens of treatment, and significant barriers to care.
The PJM was created through a 2-stage process. Initially, researchers conducted a landscape analysis, reviewing scientific literature, case studies, and patient resources. Subsequently, insights were gathered from 2 patient advisory board meetings and individual interviews with seven aPAP patients to capture their personal experiences.
There were 4 main phases highlighted in the patient journey:
- Symptoms before diagnosis
- The diagnosis process
- Treatment
- Ongoing monitoring
Participants reported seeing multiple pulmonologists, experiencing at least 1 misdiagnosis—often pneumonia—and enduring lengthy waits for accurate diagnoses, sometimes spanning months or years. Treatment options, including whole lung lavage and off-label therapies, were described as burdensome and financially stressful.
Patients expressed the need for standardized guidelines for diagnosing and treating aPAP and highlighted barriers to care, such as insurance issues and limited access to specialized providers. They called for improved education about aPAP among healthcare professionals to enhance patient experiences.
Reference
Sathyanarayanan SP, et al. A patient journey map for people living with autoimmune pulmonary alveolar proteinosis (aPAP). Poster presented at: 2024 CHEST Annual Meeting; October 6-9, 2024; Boston, MA.
