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The following is a summary of “Integrated Care for People Living With Rare Disease: A Scoping Review on Primary Care Models in Organization for Economic Cooperation and Development Countries,” published in the January 2025 issue of Primary Care by Vidic et al. 

Rare diseases are common collectively, leading to high health system use. Primary care is key to integrated care for these conditions. 

Researchers conducted a retrospective study on rare disease management in primary care. 

They conducted a scoping review using Joanna Briggs Institute and PRISMA methods with a Consolidated Framework for Implementation Research tool to examine integrated rare disease care in OECD primary care settings. 

The results showed that the most cited primary care provider (PCP) roles were diagnosis (n = 14), care coordination (n = 16), primary and preventative care (n = 18), management of rare-disease care (n = 13), and treatment monitoring (n = 10). Active PCP involvement was linked to shorter diagnostic delays, improved care transitions, reduced emergency and hospital use, better psychosocial care, enhanced quality of life (QoL), and improved palliative care. 

Investigators found that adequate communication, resources, time, and reimbursement for complex care were still needed. Future integrated rare disease care models were recommended to be developed by or with PCPs. 

Source: journals.sagepub.com/doi/10.1177/21501319241311567