Weight management communications in idiopathic intracranial hypertension: challenges and recommendations from the patients’ perspective

Background Idiopathic intracranial hypertension (IIH) is a neurometabolic condition severely impacting the quality of life of people living with IIH (PwIIH). Most PwIIH are overweight or live with obesity, and weight loss is recommended by healthcare professionals (HCPs) as it is central to disease management. There is currently no research evaluating patient–clinician interactions when discussing weight management in IIH. The aim of this study was to evaluate the patient experience of communication with HCPs regarding weight management from the perspective of PwIIH. Methods A cross-sectional online survey was developed and distributed by the IIH UK charity via their mailing list and social media network. Eligible participants were adults with IIH who have been recommended to lose weight by their HCP. Descriptive statistics were used to summarise quantitative responses and content analysis was used to inductively draw out themes from open-ended free-text responses. Results There were 625 respondents. One-fifth of PwIIH (n=127/603, 21%) felt that HCPs were supportive and empathetic about weight management. Five themes were identified on how experiences regarding weight management for IIH can be improved, with PwIIH recommending for HCPs to: (1) detail the relationship between IIH and weight, (2) individualise care, (3) give advice, (4) provide support and (5) adapt communication. Conclusion The majority of PwIIH recalled a poor experience and negative emotions when engaged in discussions regarding weight management with their HCPs. Further research should explore the HCPs perspective and evaluate interventions aiming to improve the quality of patient–HCPs communication in IIH. No data are available. The data are not shareable due to the qualitative nature of data collection, in order to maintain participant anonymity.