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

Sally Abbott, Amanda Denton, Sui H Wong, Susan P Mollan, Kim Bul

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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 summarize 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.
Original languageEnglish
Article numbere000527
Number of pages7
JournalBMJ Neurology Open
Issue number2
Early online date9 Dec 2023
Publication statusPublished - 9 Dec 2023

Bibliographical note

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/


This study was funded by the IIH UK charity (grant/award number N/A).


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