Prevalence and User Characteristics of Specific Diets in People with Multiple Sclerosis Kathryn C. Fitzgerald1, ScD; Tuula Tyry2, PhD; Amber Salter3, PhD, Stacey S. Cofield4, PhD; Robert Fox5, MD; Gary Cutter4, PhD; and Ruth Ann Marrie6, MD, PhD 1Johns Hopkins University, Baltimore, MD, USA; 2Dignity Health, St. Joseph's Hospital and Medical Center, Phoenix, AZ, USA; 3Washington University in St. Louis, St. Louis, MO, USA; 4University of Alabama at Birmingham, Birmingham, AL, USA; 5Cleveland Clinic, Cleveland, OH, USA,; 6University of Manitoba, Winnipeg, MB, Canada

Background Table 1. Prevalenceof Most Commonly Tried Diets in NARCOMS Participants, Reasons for Following, and Perceived Effectiveness Figure 3. Specialized diets and relative composition of diet among individuals Previously followed diet Currently following diet previously following of the specialized diets queried • Diet influences immune function, oxidative stress, and mitochondrial Reason for following the diet Reason for following the diet function,all of which appear to playa rolein multiplesclerosis(MS).1 Felt diet was Feel diet is MS Weight loss General Health effective MS Weight loss General Health effective • The role of diet in MS is also supported by studies suggesting that people N (%) N (%) N (%) N (%) N (%) N (%)Results N (%) N (%) with MS are at an increased risk of cardio-metabolic comorbidities and General diets 2 that these comorbiditiesmayadverselyaffectoutcomes. Mediterranean 61 (35.26) 84 (48.55) 181 (81.5) 113 (65.32) 96 (43.24) 65 (29.28) 114 (65.9) 193 (86.94) Low carbohydrate 60 (16.76) 267 (74.58) 370 (72.8) 218 (60.89) 195 (38.39) 304 (59.84) 153 (42.7) 461 (90.75) Objectives Low calorie 59 (1.36) 358 (8.25) 321 (67.5) 285 (6.57) 135 (28.42) 320 (67.37) 170 (38.0) 398 (83.79) Low sugar 47 (25.54) 104 (56.52) 502 (78.1) 118 (64.13) 227 (35.36) 295 (45.95) 103 (56.0) 562 (87.54) • To characterize the prevalence and user characteristics of an extensive Gluten-free 127 (54.27) 48 (20.51) 16 (4.1) 72 (30.77) 221 (56.96) 79 (20.36) 10 (4.3) 341 (87.89) list of possible specialized diets, ranging from diets recommended for MS specific diets general health (e.g. Mediterranean) to MS-specific diet (e.g. Wahl’s, Wahl's 108 (80) 24 (17.78) 40 (38.4) 61 (45.19) 88 (84.62) 24 (23.08) 38 (28.1) 88 (84.62) Swank) to populardiets (e.g. Nutrisystem,Atkins). Swank 326 (85.56) 44 (11.55) 21 (24.7) 156 (40.94) 73 (85.88) 7 (8.24) 21 (5.5) 79 (92.94) • Assess the reasons for following a given specialized diet, whether it’s *Participants could report multiple reasons for following a diet. perceived to be effective and describe characteristics of participants who Figure 1. Specialized diets and characteristics of individuals currently following the specialized diets queried chose to follow a particulardiet MS-specific diets Diets for General Health / Weight Management Figure 3. We assigned percentile rankings to each individual intakes for each food group. Values Methods plotted are medians of percentile rankings (axis values) among individuals following the specific diet in question. • A cross-sectional study of responders from the North American Research Committee on MS (NARCOMS) Registry.3 Participants report demographic, clinical and disease Table 2. Diet history and Clinical Characteristics of Study Participants characteristics on biannual surveys. Current or past use of one of the queried diets • In a 2015 update survey, participants reported current or previous exposure to a list of 19 specific diets or diet plans that they may have followed since being diagnosed with Yes No P-value* MS. N (%) N (%) Disease subtype • Participants reported whether they were currently following each diet, had previously RRMS 1775 (58.4) 1833 (51.7) <0.001 followed it, the reason for following it (weight management, general health or their MS) SPMS† 709 (23.3) 863 (24.4) and whether it wasfelt to be effective. PPMS‡ 205 (6.7) 381 (10.8) • Participants also reported current dietary composition, including information on intakes PDDS of fruits, vegetables and legumes, whole grains, added sugar, red meat and overall diet 0-4 2100 (67.6) 2207 (60.3) <0.001 quality. ≥5 1009 (32.4) 1446 (39.7) Results Figure 2. Specialized diets and relative composition of diet among individuals currently following the specialized diets queried Had relapse in past 6 months 559 (18.4) 659 (18.6) 0.93 Feeling of gradual symptom MS-specific diets 1001 (32.6) 1333 (36.4) 0.001 • Among the 7639 responders (69%), 6990 individuals were eligible for the analysis (221 Diets for General Health / Weight Management worsening in past 6 months did not have physician diagnosed MS, 377 did not provide information on their current *P-value calculated using chi-square tests; †Secondary progressive; ‡Primary progressive diet). • Responders tended to be older (59 years vs. 56 years), Caucasian (92% vs. 88%) and Conclusions have longer disease durations (20 years vs. 17 years). They had similar disease severity • In this large survey, nearly half of the respondents reported having (Patient-Determined Disease Steps [PDDS]: 3 vs. 3) at enrollment. followed a specific diet plan since being diagnosed with MS. • Among the 3120 participants who report any exposure to one of the diets, common • Those who followed a specific diet tended to have better overall diet specialized diets participants were currently following were: low sugar diets (Table 1; quality and health behaviors than those with no exposure to any of the n=642, 9.2%), low-carbohydrate diets (n=508, 7.3%), low calorie diets (n=475, 6.8%) and diets. gluten-freediets (n=388, 5.6%). • Prospective studies are needed to assess how adherence to a specific diet • MS-specific diets were less common (for Swank diet: n=104 [1.5%]; for Wahl’s: n=85 may affect MS symptoms as well as general health. [1.2%])

• Participant characteristics and diet composition varied across the list of diets queried 1 References (Figures 1-3). Those with no history of following any specific diet tended to have the References worst overall diet quality and not participate in physical activity and were more likely to 1. Islam MT. Neurol Res. 2017. PMID: 27809706; 2. Marrie RA. Neurology 2015. PMID: 26019190; 3. Marrie RA. Figure 2. For diet quality scores, higher scores denote higher overall diet quality (i.e. higher intakes of fruits, vegetables, legumes and whole grains, and lower intakes of red MSJ 2007. PMID: 17525097 be smokers. meat and added sugars). We assigned percentile rankings to each individual’s intakes of each food group. Values plotted are medians of percentile rankings (axis values) among individuals following the specific diet in question. For example, among individuals following the Swank diet (n=466), participants on average fell at that 65th percentile of intake • Those with a history of following the diets were more likely have relapsing-remitting th Source of support: of fruits, vegetable and legumes while persons not following any special diet on average were at the 50 percentile of intake of fruits, vegetables and legumes. Other diets NARCOMS is sponsored in part by the Consortium of MS Centers (CMSC) and the Foundation of the CMSC. (RR) MS, lower PDDS scores and were less likely to report feeling of gradual symptoms displayed were most prevalent of the specialized diets queried and included Mediterranean diet (n=222), low calorie (n=475), low carbohydrate (n=508), low sugar (n=642), and KCF is supported by postdoctoral fellowships from NARCOMS and NMSS worsening than those with no history (Table 2). gluten free (n=388). SSBdenotes sugar-sweetened beverages. National MS Society Travel Awardee to KCF