Patient passports for rare diseases: results of a pilot study

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 considerable time explaining medical needs to new care teams; 65.6% found communicating care needs challenging. Nearly all respondents (99.4%) believed a document presenting relevant healthcare information would be helpful. Among 55 'post-passport' survey respondents, 85.1% used the passport during care interactions; 72.2% found it eased communication with unfamiliar teams, and 64.2% felt more confident communicating their needs. Over half (53.8%) felt the passport helped access needed care, 67.9% found it more useful than existing tools, and 75.9% were highly likely to recommend it to peers. All 31 HCP respondents listed perceived benefits, including improved HCP-patient/caregiver communication; some noted a preference for formal endorsement. By alleviating patient/caregiver-HCP communication challenges, this rare-disease-specific patient passport can enhance healthcare coordination and patient experiences. Participants' use of the passport during interactions with care teams and likelihood of recommendation to peers support its widespread integration. Further work to assess usability across healthcare settings and to gain formal endorsement is warranted.