Mapping the PIK3CA-related overgrowth spectrum (PROS) patient and caregiver journey using a patient-centered approach.

Lara Rodriguez-LagunaKristen DavisMellenee FingerDawn AubelRobin VlamisCraig Johnson

Published in: Orphanet journal of rare diseases (2022)

This patient journey in PROS was created in collaboration with patients, caregivers, and advocates as key partners. This novel methodology, which could be applied elsewhere, can more accurately identify areas of unmet need, barriers to care, education topics, and assist HCPs to understand the patient and family perspective.

Keyphrases

case report
healthcare
palliative care
end stage renal disease
newly diagnosed
chronic kidney disease
quality improvement
high resolution
patient reported
men who have sex with men
hiv testing
chronic pain