Patient passports improve life for rare disease families: Study
Pilot shows improved coordination eases burden on patients, caregivers
A patient passport designed for people with rare diseases such as aromatic L-amino acid decarboxylase (AADC) deficiency can ease communication and care coordination challenges faced by patients and their caregivers, a pilot study showed.
Participants reported that the passports — concise documents that summarize a person’s condition, care needs, treatment plan, key contacts, and emergency instructions — reduced the burden of repeatedly explaining their conditions. Care teams also became more responsive to patient needs, they said. Most users found the passport more helpful than other tools and said they would recommend it to others.
A “wider dissemination and integration of this patient passport could support wide-spread improvements in communication between patients/caregivers and [healthcare providers],” the researchers wrote. “In turn, this could lead to reduced patient and caregiver burden and improved quality of care and life for individuals with rare conditions.”
The study, “Patient passports for rare diseases: results of a pilot study,” was published in the European Journal of Human Genetics.
Patients with rare diseases frequently encounter healthcare providers who are unfamiliar with their specific conditions, often due to limited awareness, inadequate training, or a lack of clinical guidelines. As a result, patients or caregivers often have to explain the condition and medical history themselves. Repeatedly doing so, especially in emergencies, can be emotionally taxing.
Widespread adoption lacking despite potential
Patient passports have the potential to facilitate quick and accurate communication between patients and healthcare providers, enhancing care coordination and improving the overall patient experience.
Still, “there is no widely adopted, versatile patient passport that comprehensively addresses the multifaceted needs of those affected by rare diseases,” wrote the researchers who conducted the study.
The patient passport was co-designed by the Cambridge Rare Disease Network (CamRARE), in collaboration with patients with rare diseases and healthcare providers. It included sections on personal details, diagnosis, medical and emergency healthcare history, and care preferences.
Study participants completed surveys before and after using the passport.
A total of 157 people answered the pre-passport survey. Slightly more than half (53.5%) of them were caregivers, and the remaining 46.5% were rare disease patients. Most (69.2%) reported interaction with care teams at least once a month.
In the pre-passport survey, the main issue facing patients or caregivers during routine care or emergencies was that healthcare providers had insufficient knowledge of their disease. Nearly all (96.2%) reported spending a considerable amount of time explaining important medical information and their care needs. Most (65.6%) reported that communicating their care needs was challenging.
Fifty-five participants fully completed the post-passport survey. Nearly all (85.5%) had interacted with care teams, and 85.1% had used the patient passport during these interactions. Most (81.3%) said they used it in routine clinical care settings.
Survey respondents had positive views about the patient passport. Most (72.2%) said it made communicating their medical needs to unfamiliar care teams easier, and more than half (64.2%) said they felt more confident in doing so. A minority (13.2%) said the passport didn’t reduce the time spent explaining their needs.
About half (53.8%) felt the passport helped them access needed care and made care teams more accommodating. Around two-thirds (67.9%) agreed it was more useful than any other tool they had used when interacting with new care teams.
Nearly all participants (92.5%) said they would continue using the patient passport, and three-quarters (75.9%) said they were highly likely to recommend it to others in the rare disease community.
In open-ended feedback, many participants emphasized the need for greater awareness and acceptance of the passport among healthcare professionals, suggesting that endorsement by major health organizations could help. Some users requested formatting changes, such as a more flexible layout, bolder text, and a larger font size.
The survey was also completed by 31 healthcare providers, nearly all of whom were doctors (83.9%). All physician respondents reported interacting with patients with rare diseases in clinical practice.
Healthcare providers identified several benefits of the patient passport, most commonly improved communication with healthcare providers, particularly in emergency or high-stress situations. They also cited advantages including reduced stress during hospital visits, increased patient empowerment, and supporting the development of individualized care plans.
However, respondents expressed concerns about the accuracy of patient-entered information, the lack of clinician input, and security concerns regarding data privacy. They suggested adding more clinical detail, linking passports to medical records, providing more space for complex conditions, and making emergency-relevant information more prominent.
“These findings strongly support the passport’s integration into healthcare systems,” the researchers concluded. “However, further work is warranted to explore its usability and effectiveness across diverse healthcare settings.”
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