The Effective Management of Idiopathic Intracranial Hypertension Delivered by In-person and Virtual Group Consultations: Results and Reflections from a Phase One Service Delivery

Abstract

ABSTRACT The increasing incidence of idiopathic intracranial hypertension (IIH) with the obesity epidemic is leading to increased pressures on service capacity. Evidence shows that group consultations (GCs) deliver effective, person-centred healthcare, but the feasibility for IIH is unknown. We set out to develop and test a safe and effective GC service for IIH. Through an interactive approach, we co-designed a bespoke in-person and virtual GC model, where patients are reviewed in a group setting. Improvements were made following each session following patient input and team reflections. Outcomes measured included patient satisfaction, self-perceived health literacy, and successful implementation of the GCs. During the pilot, eight in-person GCs were delivered: once-monthly (Oct–Dec 2019), then twice-monthly (Jan–Feb 2020). Feedback was received from 49/53 patients. 100% felt more satisfied and heard, 100% felt more involved in decision-making, 98% had a better understanding of their condition, 96% felt more able to cope with their condition and keep themselves healthy, 94% rated this as a positive experience, and 90% reported improved access and more time with their clinician compared with existing 1:1 appointments. Since September 2020, in response to the COVID-19 pandemic, we transitioned to weekly virtual GCs, receiving overwhelmingly positive feedback (median scores: patient satisfaction 9.5/10; being listened to by clinician 10/10; involved by clinician in treatment decisions 10/10; clinician explanation of treatment 10/10; and opportunity to discuss condition or treatment 10/10). GCs are safe and effective for IIH, and preferred in our patient cohort. This allowed ongoing high-quality, person-centred care despite challenges from the COVID-19 pandemic.