Patient passports for rare diseases: results of a pilot study.

ABSTRACT: For individuals with rare diseases, complex needs requiring multidisciplinary management can cause disjointed healthcare and challenges communicating with healthcare professionals (HCPs). 'Patient passports' support communication and healthcare coordination by sharing healthcare information with HCPs, reducing burden on patients/caregivers. Currently, no widely adopted passport addresses the multifaceted needs of patients with rare diseases. This pilot study was a service evaluation of a rare-disease-specific patient passport, co-designed with patients and HCPs. Patients/caregivers completed surveys before ('pre-passport') and after ('post-passport') using the passport. HCPs were surveyed on their perception of the passport. Of 157 'pre-passport' survey respondents, 96.2% spent considerabl

SUBMITTER: Balfour J 

PROVIDER: S-EPMC12816684 | biostudies-literature | 2026 Jan

REPOSITORIES: biostudies-literature