Improving care for complex brain disorders: insights from patient experiences in a Canadian brain medicine clinic

Abstract

ObjectiveLittle is known about best practices in service delivery for people experiencing complex brain disorders (CBDs) involving affective, behavioural, and cognitive symptoms. We aimed to assess the experiences and perceived healthcare needs of patients at a Brain Medicine Clinic (BMC), using their insights to drive improvements in care delivery.MethodsWe contacted all patients seen in the BMC between May and July 2024 and recruited 15 participants. We conducted 30 min semi-structured interviews that were audio-recorded and transcribed verbatim. Line-by-line coding was performed inductively using NVivo V.14 software, followed by a thematic analysis to identify emerging themes and subthemes.ResultsThree main themes were identified as being related to care quality at the BMC: (1) Access, Navigation and Coordination, (2) Knowledge Translation and (3) Therapeutic Alliance. Based on these themes, three key practice recommendations were developed for care quality improvement, including (1) introducing a care navigator, (2) the provision of structured after-visit summaries and preparatory materials and (3) integrating empathy and communication training into the education of practitioners delivering this care.ConclusionsThe results support the need for and underscore the benefits of integrated care models in managing CBDs, such as a BMC. Future studies should evaluate the effects of implementing the proposed recommendations.