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Published online by Cambridge University Press: 10 July 2025
Background: Neurofibromatosis 1 (NF1) is a multisystem neurocutaneous disorder. Treatment involves multiple specialists. There are currently no multidisciplinary clinics for adults with NF1 in BC, which impacts communication between subspecialties. We sought perspectives of patients and providers to identify the impact of and solutions to gaps in care. Methods: Focus groups with patients (2 groups; 9 patients) and physicians (10) who see people with NF1 were conducted. Thematic content analysis was applied to the data to derive major themes. Concurrently, quarterly NF multidisciplinary rounds were initiated to enhance coordination of care. Results: Major themes emerged around the need for increased coordination and communication amongst providers. Specifically, physicians identified working in “siloed care structures”, and patients and providers identified lack of awareness of expertise and barriers to accessing care. Conclusions: Focus groups enable inclusion of patient and provider perspectives in developing solutions to gaps in care. The importance of supporting interdisciplinary communication in caring for NF1 patients was confirmed in focus groups. To date, we have held multidisciplinary NF rounds, with 12 cases discussed. Disciplines represented include neurology, pediatrics, radiology, neuro-ophthalmology, neuro-otology, pathology, orthopedic plastic and neurosurgery, medical and radiation oncology, and the hereditary cancer program. Telehealth format enables participation from distributed centres across BC.