Discussions about body weight are critical to the long-term management of idiopathic intracranial hypertension (IIH), an obesity-related condition that can lead to poor quality of life and potential vision loss, among other health concerns. According to this study, however, many patients with IIH feel that communications with their health care providers (HCPs) about body weight leave a lot to be desired.
This UK-based study utilized the online SurveyMonkey platform to survey 625 adult patients with IIH who had previously been advised to lose weight by one or more HCPs, most commonly neurologists (88%) and ophthalmologists (50%). Participants were recruited via the IIH UK group membership mailing list and social media channels. The survey used both closed questions and open free-text questions to evaluate patient experiences regarding communications with their HCP about weight management and living with IIH.
Overall, only 20% of respondents were content with how weight was discussed by HCPs, many reporting negative feelings surrounding the interactions, and only 21% felt their HCP was empathetic and supportive about weight management. Patients with IIH generally expressed a desire for HCPs to ask for permission before discussing weight, but this approach was utilized by only 7% of HCPs. Twenty-two percent of respondents reported that HCPs offered some form of specific weight-management support (most commonly referral to a nutritionist/dietitian or to a state-funded weight loss program). Only 30% of patients reported being provided a specific weight-loss target.
The study suffers from the usual weaknesses of online-survey data, including the exclusion of patients with less digital literacy or access to digital media, as well as recall bias due to a potentially long period of time between IIH-related appointments and completing the questionnaire. There is also a lack of objective data regarding demographics and disease severity among respondents due to the self-reporting nature of the survey. Additionally, patient perception of HCP performance does not precisely equate to objective measures of HCP performance, particularly in the discussion of ultra-sensitive topics like body weight. It may be that for some patients with IIH, there is not an effective way to approach this topic without evoking negative emotions.
As a practicing ophthalmology residency–trained neuro-ophthalmologist, I found this study to be profoundly thought-provoking because it quantifies and validates my previous gestalt that HCPs caring for IIH (myself included) are providing inadequate counseling regarding weight loss, even though weight management remains the most important long-term treatment for IIH. Neuro-ophthalmologists and ophthalmologists routinely care for patients with IIH, but little (if any) formal training is provided in ophthalmology or neurology residency on how to optimally approach this sensitive topic with patients, and until this publication there was a lack of published studies on patient perspectives of HCP performance when discussing weight loss.
This study provides an excellent framework from which to create a more effective dialogue with patients, providing specific recommendations on content that should be included in such a talk (e.g., obtaining verbal consent to discuss weight, explaining that weight is simply one risk factor and part of a complex and poorly understood mechanism for IIH, providing a specific weight loss target, discussing weight loss management options) as well as an indication of approaches that might be emotionally traumatic and should be avoided (e.g. implying blame or using negative terminology such as “obese” or “fat”). While there may be no perfect approach to discussing weight loss with these patients, I feel that this study should be required reading for any HCP who treats patients with IIH. Much like how surgeons carefully prepare, rehearse, and modify their pre-surgery consent discussion over time, all HCPs who care for patients with IIH should formally prepare and routinely update their discussion of weight and weight loss to improve care for patients with IIH.
Financial Disclosures: Dr. Collin McClelland discloses no financial relationships.