Self-Reported Weight and Height Among Idiopathic Intracranial Hypertension Patients

Background: Idiopathic intracranial hypertension (IIH) mostly affects overweight and obese women. Severe obesity is associated with poorer visual outcomes in IIH, and weight gain can precipitate IIH and increase the risk of recurrence. Conversely, weight loss can decrease intracranial pressure and is an effective IIH treatment. Therefore, accurate monitoring of weight and body mass index (BMI) is important to help guide the management of IIH patients. Our goal was to compare estimated and measured BMI among patients with presumed IIH and non-IIH controls to determine whether these vital signs should be systematically measured when evaluating patients for IIH. Methods: A retrospective chart review was performed of consecutive patients with reported and measured weight and height seen in one ophthalmology-based neuro-ophthalmology clinic for IIH between January 2, 2018 and September 10, 2018. Patients with IIH or presumed IIH were compared to non-IIH controls, matched according to age (±5 years), BMI (±5 kg/m unless ≥40 kg/m), sex, and race. Patients with confirmed IIH were asked to self-report their weight when seen in follow-up and they were weighed to compare their self-reported vs measured percent weight change. Results: We included 379 subjects (140 patients; 239 controls) among whom 75 of the IIH patients were matched to non-IIH controls. Patients with presumed or definite IIH accurately estimated their height and generally underestimated their weight by a median of 1.8 kg (4 lb), resulting in a median BMI underestimate of 0.9 kg/m. There was no difference in BMI underestimation when comparing presumed or definite IIH patients to matched non-IIH controls while controlling for insurance status, smoking, diabetes, and vascular disease (P = 0.66). As BMI increased, all subjects underestimated their BMI more (by 0.9% per 10 measured BMI unit increase), when controlling for age, sex, and race (P < 0.003). Sixteen confirmed IIH patients were seen in follow-up. At initial neuro-ophthalmology consultation, these subjects underestimated their weight by a mean of 3.2%. At last follow-up they underestimated their weight by only 1.2% (P = 0.03). Conclusions: There was no evidence that IIH or presumed IIH patients had a different perception of their weight than non-IIH controls at initial neuro-ophthalmology consultation. Both patients and matched controls tended to underestimate their weight by the same amount, resulting in an overall BMI underestimation of approximately 1% per 10 measured BMI unit increase. Heavier subjects tended to underestimate their body weight and resultant BMI more, and IIH patients tended to estimate their weight more accurately at follow-up. Our results emphasize the need to systematically objectively measure the weight of presumed IIH patients seen in an ophthalmology clinic.

Clinical Research: Epidemiology Meets Neuro-Ophthalmology Section Editors: Heather E. Moss, MD, PhD Stacy L. Pineles, MD Self-Reported Weight and Height Among Idiopathic Intracranial Hypertension Patients Deborah C. Parish, MD, MSc, Samuel Bidot, MD, Beau B. Bruce, MD, PhD, Jonathan A. Micieli, MD, Richard J. Blanch, MB ChB, PhD, Anna B. Newman, Nancy J. Newman, MD, Valérie Biousse, MD Background: Idiopathic intracranial hypertension (IIH) mostly affects overweight and obese women. Severe obesity is associated with poorer visual outcomes in IIH, and weight gain can precipitate IIH and increase the risk of recurrence. Conversely, weight loss can decrease intracranial pressure and is an effective IIH treatment. Therefore, accurate monitoring of weight and body mass index (BMI) is important to help guide the management of IIH patients. Our goal was to compare estimated and measured BMI among patients with presumed IIH and non-IIH controls to determine whether these vital signs should be systematically measured when evaluating patients for IIH. Methods: A retrospective chart review was performed of consecutive patients with reported and measured weight and height seen in one ophthalmology-based neuroophthalmology clinic for IIH between January 2, 2018 and September 10, 2018. Patients with IIH or presumed IIH were compared to non-IIH controls, matched according to age (±5 years), BMI (±5 kg/m2 unless $40 kg/m2), sex, and race. Patients with confirmed IIH were asked to selfreport their weight when seen in follow-up and they were weighed to compare their self-reported vs measured percent weight change. Departments of Ophthalmology (DCP, SB, BBB, ABN, NJN, VB), Neurology (BBB, NJN, VB), and Epidemiology (BBB), Emory University, Atlanta, Georgia; Department of Ophthalmology and Vision Sciences (JAM), University of Toronto, Toronto, Canada; Academic Department of Military Surgery and Trauma (RJB), Royal Centre for Defense Medicine, Birmingham, United Kingdom; Neuroscience and Ophthalmology (RJB), Institute of Inflammation and Ageing, University of Birmingham, Birmingham, United Kingdom; and Department of Neurological Surgery (NJN), Emory University, Atlanta, Georgia. V. Biousse is a consultant for GenSight Biologics, and is supported in part by NIH/NEI core grant P30-EY06360 (Department of Ophthalmology, Emory University School of Medicine), and by NIH/NINDS (R01-NS089694). N. J. Newman is a consultant for GenSight Biologics, Santhera and Stealth Pharmaceuticals and is a member of the Data Safety Monitoring Board for Quark Pharmaceuticals' NAION clinical trial. A. B. Newman is supported in part by NIH/NEI core grant P30-EY06360 (Department of Ophthalmology, Emory University School of Medicine), and by NIH/NINDS (R01-NS089694). The remaining authors report no conflicts of interest. Address correspondence to Valérie Biousse, MD, NeuroOphthalmology Unit, Emory Eye Center, 1365-B Clifton Road NE, Atlanta, GA 30322; E-mail: [e-mail] Parish et al: J Neuro-Ophthalmol 2020; 40: 157-162 Results: We included 379 subjects (140 patients; 239 controls) among whom 75 of the IIH patients were matched to non-IIH controls. Patients with presumed or definite IIH accurately estimated their height and generally underestimated their weight by a median of 1.8 kg (4 lb), resulting in a median BMI underestimate of 0.9 kg/m2. There was no difference in BMI underestimation when comparing presumed or definite IIH patients to matched non-IIH controls while controlling for insurance status, smoking, diabetes, and vascular disease (P = 0.66). As BMI increased, all subjects underestimated their BMI more (by 0.9% per 10 measured BMI unit increase), when controlling for age, sex, and race (P , 0.003). Sixteen confirmed IIH patients were seen in follow-up. At initial neuro-ophthalmology consultation, these subjects underestimated their weight by a mean of 3.2%. At last follow-up they underestimated their weight by only 1.2% (P = 0.03). Conclusions: There was no evidence that IIH or presumed IIH patients had a different perception of their weight than non-IIH controls at initial neuro-ophthalmology consultation. Both patients and matched controls tended to underestimate their weight by the same amount, resulting in an overall BMI underestimation of approximately 1% per 10 measured BMI unit increase. Heavier subjects tended to underestimate their body weight and resultant BMI more, and IIH patients tended to estimate their weight more accurately at follow-up. Our results emphasize the need to systematically objectively measure the weight of presumed IIH patients seen in an ophthalmology clinic. Journal of Neuro-Ophthalmology 2020;40:157-162 doi: 10.1097/WNO.0000000000000861 © 2019 by North American Neuro-Ophthalmology Society W eight plays a central role in the pathophysiology, diagnosis, and management of idiopathic intracranial hypertension (IIH) (1-15). Weight is the major modifiable risk factor for developing IIH, and weight loss is the mainstay of long-term IIH treatment. In addition, the magnitude and timing of weight gain are important prognostic factors (7). Recording the exact weight and height of all IIH 157 Copyright © North American Neuro-Ophthalmology Society. Unauthorized reproduction of this article is prohibited. Clinical Research: Epidemiology Meets Neuro-Ophthalmology patients at baseline, and knowing the weight again at each follow-up visit, is therefore critical to appropriately guide management. Unfortunately, measurement of weight and height is not systematically performed on IIH patients seen in ophthalmology clinics, where vital signs are not always obtained. In this setting, patients are often asked to selfreport their weight and height to the provider and staff, which may not be reliable. Indeed, it is has been shown that most patients do not accurately estimate these biometrics, and tend to overestimate their height and underestimate their weight (16-18), resulting in an overall underestimation of their body mass index (BMI). In addition, these under- or over-estimations are magnified in overweight and obese people (17-19) and among women (16,18,19). Other suggested factors affecting selfestimation of weight include race (20) and the presence of vascular risk factors, such as diabetes mellitus and smoking (21). Because over 90% of IIH patients are overweight or obese women, it is likely that self-reported height and weight will be inaccurate in these patients. To our knowledge, no study has addressed the reliability of selfreported weight and height in IIH patients. Our objective was to determine the accuracy of self-reported weight and height by new patients seen for IIH in an ophthalmologybased neuro-ophthalmology clinic, and to determine whether providing measured weight to patients at baseline would increase the accuracy of self-reported weight during follow-up visits. METHODS We performed a retrospective chart review of all new patients $18-years-old referred for IIH or presumed IIH to one ophthalmology-based tertiary neuro-ophthalmology clinic between January 2, 2018 and September 10, 2018. Only patients with documented, self-reported, and measured weight and height were included (we started to routinely obtain this information on all new patients seen in our clinic on January 2, 2018). Children and pregnant women were excluded. Approval was obtained from our institution's institutional review board. At their first neuro-ophthalmology visit, patients were asked to provide their weight and height to calculate their Weight self-estimated BMI (Height 2 , with weight in kilogram [kg], and height in meters [m]). All patients were then weighed and measured using the same scale and height rod (Detecto, Webb City, MO) with shoes and outerwear off and empty pockets, allowing calculation of the measured BMI. Patients were matched to a non-IIH control (patients seen in our neuro-ophthalmology clinic for another reason than presumed IIH), according to sex, age (±5 years), race, and BMI (±5 kg/m2 for patients with a BMI of #40 kg/m2; patients and controls with a BMI of .40 kg/m2 were grouped together). Demographics, smoking history, diabe158 tes and other co-existing vascular risk factors (hypertension, hyperlipidemia, and history of coronary artery disease) were recorded. We collected information on insurance status as a surrogate for socioeconomic status. All patients with confirmed IIH were counseled regarding the importance of weight loss and weight monitoring. Patients with a definite diagnosis of IIH were seen in follow-up, at which time their self-reported weight was again compared with their measured weight. This was done with the goal of measuring the accuracy of their own estimation of percentage weight change after their initial neuro-ophthalmology consultation. Statistical analysis was performed with R: A language and environment for statistical computing (R Foundation for Statistical Computing, http://www.R-project.org). Means and ±SDs were reported for continuous, normally distributed data, and medians and interquartile ranges (IQR) were reported otherwise. Linear models comparing the differences in estimates from patients seen in an IIH clinic and their matched controls, which controlled for insurance status, smoking status, diabetes, and other vascular risk factors were performed, followed by additional linear regression models of the degree of under- or over-estimate controlling for measured BMI, age, sex, and race. A paired t test was used to compare estimation by the same patient at intitial vs follow-up visit. RESULTS We identified 379 subjects (140 patients; 239 controls) with documented, self-reported, and measured weight and height over the study period. We were able to match 75 patients with presumed or definite IIH to 75 controls on the basis of age, sex, race, and BMI (Table 1). Overall, the matched 75 patients with presumed or definite IIH accurately estimated their height (median difference [IQR] of 0.0 cm [0.0; 0.6], 0.0% [0.0; 1.0] and underestimated their weight by a median of 1.8 kg (4 lbs) [23.6; 20.5] (22.1% [23.5; 20.6]) causing a median BMI underestimate of 0.9 kg/m2 [21.8; 20.3] (22.1% [23.5; 20.6]). Similarly, controls estimated their height accurately by a median difference of 0.0 cm [0.0; 1.0] (0.0% [0.0; 1.4]) and generally underestimated their weight by a median of 1.4 kg (3 lbs) [23.2; 0.2] (21.9% [23.6; 0.2]) causing a median BMI underestimate of 0.7 kg/m2 [21.7; 20.0] (22.0% [24.5; 20.1]). There was no significant difference between BMI underestimation comparing presumed or definite IIH patients to matched controls when controlling for insurance status, smoking, diabetes mellitus, or vascular disease (P = 0.66). In addition, BMI underestimation was not significantly affected by insurance status, diabetes, smoking, or other vascular risk factors. As we did not find any difference in BMI underestimation between patients and their matched controls, we included all 379 subjects for further analysis. Multiple Parish et al: J Neuro-Ophthalmol 2020; 40: 157-162 Copyright © North American Neuro-Ophthalmology Society. Unauthorized reproduction of this article is prohibited. Clinical Research: Epidemiology Meets Neuro-Ophthalmology TABLE 1. Characteristics of the 75 matched patients evaluated for presumed or definite idiopathic intracranial hypertension at initial neuro-ophthalmic consultation n (%) or Median [IQR] Demographics Age, yrs Women Race Black White Hispanic BMI, kg/m2 Overall 18.5-24.9 (normal) 25-29.9 (overweight) 30-34.9 (low-risk obesity) 35-39.9 (moderate-risk obesity) $40 (high-risk obesity) Vascular risk factors Smoking Diabetes mellitus Others (HTN, HLD, CAD) 37 [31; 47] 71 (95%) 39 (52%) 33 (44%) 3 (4%) 36.2 [30.1; 41.3] 3 (4%) 15 (20%) 18 (29%) 14 (19%) 25 (33%) 5 (14%) 16 (21%) 11 (15%) 25 (33%) BMI, body mass index; CAD, coronary artery disease; HTN, arterial hypertension; HLD, hyperlipidemia; IQR, interquartile range. linear regression analysis showed that as measured BMI increased, the underestimation of self-reported BMI increased (by 0.9% per 10 BMI unit increase [95% CI: 0.3, 1.5]) when controlling for age, sex, and race (P = 0.003) (Table 2 and Fig. 1). In addition, black subjects significantly underestimated their BMI more than whites (P = 0.03). Sixteen patients with definite IIH were seen in follow-up (median: 6.8 months [5.8; 10.6]). At initial neuroTABLE 2. Estimated coefficients in a multiple linear regression from the % difference between selfreported and measured BMI by actual BMI, age, gender, and race (black men as a reference) Coefficients Intercept BMI Age Gender, women Race White Hispanic Asian 95% CI 20.13 20.09 20.02 0.66 23.18, 20.15, 20.05, 20.94, 1.15 22.47 0.27 0.04, 2.26 25.31, 0.35 24.86, 5.41 2.92 20.03 0.02 2.26 P 0.932 0.002 0.365 0.420 0.041 0.086 0.917 For example, according to the prediction model, a 35-year-old black woman measuring 168 cm (5 foot 6 inches) who weighs 141 kg (310 lb) (BMI of 50 kg/m2) underestimated her weight on average by 6.6 kg (14.6 lb), resulting in an underestimation of her BMI by 4.7%. 95% CI, 95% confidence interval; BMI, body mass index. Parish et al: J Neuro-Ophthalmol 2020; 40: 157-162 ophthalmology visit, these subjects underestimated their weight by a mean of 3.2 ± 2.9%, and at the last follow-up they underestimated their weight by 1.2 ± 2.1% (P = 0.03). DISCUSSION Our study shows that patients with presumed or definite IIH and their matched non-IIH controls both accurately estimated their height, but generally underestimated their weight by approximately 2%. The BMI underestimation was similar in both groups (approximately 2.5%), indicating that IIH patients seen in an ophthalmology-based neuro-ophthalmology clinic do not self-report their biometrics differently than other patients seen in the same clinic. We also found a significantly larger underestimation of reported BMI as measured BMI increased (by about 1% per 10 BMI unit increase). In other words, the more overweight or obese the patients, the more they underestimated their weight. Telling patients their measured weight at the initial neuro-ophthalmology visit and informing them that their weight would be objectively measured at each follow-up visit appeared to help patients estimate their weight at follow-up more accurately. Weight management is paramount for long-term management of IIH patients, as there is a strong relationship between IIH and BMI. Approximately 90% of IIH patients are overweight or obese (2,4), and recent weight gain is an independent risk factor for developing IIH (2,4,8,15). It is also established that weight loss is the cornerstone for longterm treatment of IIH patients (1-4,6,8,15,22). Indeed, weight loss of as little as 6%-10% of total body weight can lead to improvement or resolution of IIH (2,6,12,22). In addition, higher BMI is associated with a poorer visual prognosis, especially for patients with a BMI .40 kg/m2 (1,4,8,15,23), with each 10-kg/m2 increase in BMI conferring a 1.4 times increased risk of severe vision loss in one previous study (1). Given the worldwide growing epidemic of obesity (23,24), the incidence of IIH is expected to rise, and rigorous weight management will be critical (25). Because weight plays such a central role in IIH management, it is essential that neuro-ophthalmologic evaluations systematically include patients' weights. Although objective measurement of vital signs, usually including weight and height, is standard in neurology clinics where nonphysician providers often evaluate patients before physicians, this is not the case in many ophthalmologic clinics in the U.S. Objectively measuring weight and height is time consuming and is typically not part of a standard ophthalmic or optometric examination. Instead, these vital signs are typically not recorded or are only self-reported. Several reasons for these differences in clinical practice include billing (unlike medical visit codes, eye codes do not require measurement of core vital signs), lack of adequate space for scales in ophthalmologic examination rooms, lack of time and staff to weigh patients, and psychological limitations (patients may resist being weighed in eye 159 Copyright © North American Neuro-Ophthalmology Society. Unauthorized reproduction of this article is prohibited. Clinical Research: Epidemiology Meets Neuro-Ophthalmology FIG. 1. Examples of body mass index (BMI) underestimation for different measured BMIs. Figure borrowed from http:// clipart-library.com/clipart/1946491.htm. Body composition cliparts #2697952 (license: Personal use). clinics if they presume that their weight is unrelated to their ocular disorder) (26). Consistent with our results, several previous studies and health surveys across various age and race groups have found that height is overestimated and weight is underestimated by both sexes (16-19,27,28), resulting in overall BMI underestimation (17,18,27); however, BMI underestimation is greater among those with higher BMI (27). It is well-established that the weight status of overweight and obese patients is consistently visually underestimated by both patients and physicians (29,30). In an era of increasing obesity prevalence, it has been suggested that the stigma often associated with obesity will change, causing overweight and obese people to be viewed, both by themselves and their physicians, as the norm, rendering systematic measurement of BMI in an ophthalmology clinic even less acceptable (19). Moreover, it has been noted that BMI underestimation is greatest among women, likely related to pressure to conform to desirable social standards (16,19). Racial differences in weight estimation have also been observed, presumably caused by differences in body perception related to cultural variations, therefore making cultural norms a potential individual risk factor for obesity and the diseases that accompany it. Indeed, previous studies (20) have found that black women are both more likely to underestimate their weight and less likely to describe themselves as obese than white women. These findings are consistent with our results that blacks underestimated their BMI more than their white counterparts, compounding their IIH risk and emphasizing the importance of accurate weight measurement. Consequently, weight misperception by physicians and their patients may lead to suboptimal assessment of patients' overweight or obese status, resulting in inappropri160 ate management, especially in morbidly obese IIH women who both tend to underestimate their weight the most and have the most worrying visual prognosis. It is also important to mention that weight accuracy varies with the scale used, especially in very obese subjects. Most professional scales, such as the one used in our study, are very precise and dependable scales. However, such scales are rarely used outside of professional health care settings, and use of a less reliable scale by IIH patients and non-IIH controls could have played a role in the underestimation of the selfreported weight, emphasizing the need to measure the weight during all medical encounters. Many of the overweight and obese patients in our study were not aware of their true weight, some not having been weighed for months before the initial neuro-ophthalmology visit. Studies on the success of long-term weight loss have shown that regular weight measurement is essential for long term maintenance of weight loss (31,32). Hence, objectively measuring the weight of presumed or definite IIH patients at each visit, and encouraging them to keep a weight log to calculate their measured BMI, should not only increase patients' awareness of the role of obesity and weight gain in IIH and its visual prognosis, but also prompt their physicians to consider medical or surgical weight intervention, when necessary. The necessity of obtaining accurate biometrics extends beyond clinical care. Researchers are expected to use reliable data, but many retrospective studies addressing the role of weight in IIH do not provide details regarding how BMI was obtained. For example, one study relied solely on the examiners' perception of the patients' weight, with no documentation of the measured weight and height (33). Other studies (8,9,34,35) on IIH extracted these data from neuroParish et al: J Neuro-Ophthalmol 2020; 40: 157-162 Copyright © North American Neuro-Ophthalmology Society. Unauthorized reproduction of this article is prohibited. Clinical Research: Epidemiology Meets Neuro-Ophthalmology ophthalmology medical records in which the status of these reports as self-reported or objective measurement is not always clear. Systematic measurement of weight and height will certainly improve the quality of further research. One possible limitation of our study is that we measured our patients' weight with clothes on. One may argue that we artificially increased the true difference between selfreported and measured BMI. We minimized this systematic bias by asking the patients to remove shoes and outerwear and to empty their pockets. In our study, for example, a 168 cm (5-foot 6 inch) woman weighing 141 kg (310 lb) would underestimate her weight by 6.6 kg (14.6 lb) on average, which cannot be explained simply by clothing weight. In addition, patients were weighted at the time of the ophthalmology visit during the day, and results obtained may differ from weight measured early morning without clothes. In conclusion, our study showed that the more overweight and obese patients were, the more they underestimated their weight, causing measured BMI underestimation. Although this underestimation may seem minimal, it is known that small changes in percent body weight can alter the course of IIH and therefore must be correctly documented. Relying on weight provided by patients when obtaining the history is inadequate and has the potential to cause suboptimal care. We strongly believe that documentation of objectively measured weight will allow neuro-ophthalmologists to monitor patients' weight loss compliance more accurately and lead to more rapid nutritional and bariatric interventions if necessary. Finally, systematic weight measurement at each neuro-ophthalmic visit will help to educate our IIH patients by heightening their awareness of the critical role of weight in their disease and its visual prognosis, thereby reducing the potential for weight regain once lost. STATEMENT OF AUTHORSHIP Category 1: a. Conception and design: J. A. Micieli, R. J. Blanch, A. B. Newman, N. J. Newman, and V. Biousse; b. Acquisition of data: D. C. Parish, J. A. Micieli, R. J. Blanch, A. B. Newman, and V. Biousse; c. Analysis and interpretation of data: D. C. Parish, S. Bidot, B. B. Bruce, A. B. Newman, N. J. Newman, and V. Biousse. Category 2: a. Drafting the manuscript: D. C. Parish, S. Bidot, B. B. Bruce, A. B. Newman, N. J. Newman, and V. Biousse; b. Revising it for intellectual content: D. C. Parish, S. Bidot, B. B. Bruce, A. B. Newman, N. J. Newman, and V. Biousse. Category 3: a. Final approval of the completed manuscript: D. C. Parish, S. Bidot, B. B. Bruce, J. A. Micieli, R. J. Blanch, A. B. 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