Abstract
OBJECTIVE:
To investigate, in a nationally-representative sample of U.S. adults, the prevalence of help-seeking among individuals with DSM-5 eating disorders (EDs) and to examine sex and ethnic/racial differences
PATIENTS AND METHODS:
The 2012-2013 National Epidemiologic Survey on Alcohol and Related Conditions-III (NESARC-III; N=36,306) included respondents who met criteria for specific lifetime DSM-5 EDs and answered questions regarding seeking-help for their ED symptoms (anorexia nervosa [AN]: n=275; bulimia nervosa [BN]: n=91; and binge-eating disorder [BED]: n=256)
RESULTS:
The prevalence (standard error [SE]) estimates of ever seeking any help for AN, BN, and BED was 34.5% (2.80%), 62.6% (5.36%), and 49.0% (3.74%), respectively. Adjusting for sociodemographic characteristics, men and ethnic/racial minorities (non-Hispanic Blacks [NHBs] and Hispanics) were significantly less likely to ever seek help for BED than women or non-Hispanic Whites [NHWs], respectively. Hispanics also were significantly less likely to seek help for AN, relative to NHWs
CONCLUSIONS:
This was the first study in a nationally-representative sample of U.S. adults to examine rates of help-seeking, including sex and ethnic/racial differences, across DSM-5-defined EDs. Our findings emphasize the need to develop strategies to encourage help-seeking among individuals with EDs, particularly among men and ethnic/racial minorities.
Keywords: anorexia nervosa; bulimia nervosa; binge-eating disorder; ethnicity, race; sex
According to the most recent estimates based on the Diagnostic and Statistical Manual 5th edition (DSM-51), prevalence of lifetime anorexia nervosa (AN), bulimia nervosa (BN), and binge eating disorder (BED) among U.S. adults are 0.80%, 0.28%, and 0.85%, respectively 2. EDs are associated with numerous medical complications, impaired health-related quality of life, and severe psychosocial functional impairment 6–8. AN, BN, and BED are also frequently comorbid with other psychiatric disorders, particularly with anxiety disorders, major depressive disorder, and substance use disorders 3, 9–12. Available research suggests EDs are associated with decreased quality of life and increased economic costs compared to other psychiatric conditions 7. Despite these possible disease burdens, there is a dearth of epidemiological research on EDs 2,3, particularly regarding prevalence and patterns of seeking help or treatment for ED symptoms. To our knowledge, no study has investigated this question since DSM-5 was published in 2013 1. This study aimed to contribute new knowledge of treatment utilization among individuals who met lifetime DSM-5-defined diagnoses of EDs in the general population.
In addition to an improved and updated understanding of the overall prevalence of help-seeking, there is also a need to examine potential disparities by sex and for ethnic/racial minorities among those with EDs. Research has revealed potential differences in sample characteristics between specialty clinic-based studies and community-based studies 13–20. These studies have specifically highlighted the potential under-utilization of mental health care by men and by ethnic/racial minorities with EDs as suggested by their under-representation in specialty clinic-based treatment studies. This has raised concerns because only a few significant sex differences have been reported in the negative impacts of ED symptoms on medical and psychiatric comorbidities, psychosocial function, and quality of life 8, 21–26. There are only few studies on ethnic/racial differences in BED clinical profiles, and these studies have found few significant differences in clinical profiles such as severity of EDs between non-Hispanic Whites and ethnic/racial minorities, with some reporting more severe ED symptoms in ethnic/racial minorities 13, 27. To our knowledge, there are no studies on ethnic/racial differences in AN or BN. Collectively, the few available clinical data highlight the potential unmet health care needs in men and ethnic/racial minorities with EDs.
Large population-based epidemiological studies are required to estimate prevalence and treatment utilization patterns and whether disparities exist in help-seeking patterns among persons with EDs. Using pooled data from the NIMH Collaborative Psychiatric Epidemiological Studies (CPES) 28, 29, Marques and colleagues 5 found that across all EDs, lifetime use of any mental health service was significantly less prevalent in all ethnic/racial minority groups, relative to non-Hispanic Whites. In this study, however, health-care utilization was operationalized as lifetime or past year use of any mental health service and it appears that the authors were not able to examine utilization of specific forms of health care nor did they assess service-use specifically for EDs. The study, which explored ethnic/racial differences, did not examine sex differences in help-seeking behaviors, although they did employ sex-stratified analyses.
The 2012-2013 National Epidemiologic Survey on Alcohol and Related Conditions III (NERSAC-III) is currently the largest epidemiologic survey study (N = 36,309) on DSM-5 psychiatric disorders in U.S adults aged 18 years and older 30. The NESARC-III included questions regarding seeking help from different treatment sources specifically for ED symptoms, allowing us to investigate the prevalence of help-seeking in U.S. adults with DSM-5 defined eating disorders and whether sex and ethnic/racial differences exist in the types of help that individuals with EDs seek. The present study aimed to estimate prevalence of ever seeking help specifically for ED-related symptoms across AN, BN, and BED diagnoses and examined whether differences exist by sex and by ethnic/racial groups. Furthermore, the present study also compared the basic developmental course of EDs (i.e., age of onset, duration with ED episodes) by sex and ethnic/racial groups to understand possible implications of sex and ethnic/racial differences in help-seeking behaviors.
PARTICIPANTS AND METHODS
Study Sample
Respondents completed computer-assisted face-to-face personal interviews performed by 970 trained lay-assessors (with an average of five years of experience performing health-related surveys) between April 2012 and June 2013. NESARC-III, designed originally to estimate the prevalence of alcohol use and related conditions in adults, included 36,309 non-institutionalized U.S. civilians 18 years and older 30, 31. Multi-stage probability sampling was employed with counties or groups of contiguous counties as primary sampling units, groups of Census-defined blocks as secondary sampling units, and households within secondary sampling units as tertiary sampling units. Eligible adults were randomly selected from each household, but Hispanic, Black, and Asian household members were oversampled (i.e., two respondents from households with more than four eligible minority members). The current study included respondents who met criteria for lifetime DSM-5 AN, BN, and BED, AND answered questions regarding help-seeking behaviors (n = 275 [AN]; n = 91 [BN]; and n = 256 [BED]) (see Figure 1 for a flow chart of the sample selection). NERSAC-III received approval from the National Institute of Health (NIH) Institutional Review Board (IRB) and participants provided oral informed-consent 31; this study was exempted from full review from the University at Albany IRB as it used existing publicly available de-identified data.
Figure 1:
A flow chart of the sample selection
1 = Did not answer question about help seeking for binge eating for BED (n = 62)
Measures
Diagnostic assessment of EDs
A structured diagnostic interview, the NIAAA Alcohol Use Disorder and Associated Disabilities Interview Schedule-5 (AUDADIS-5) 32, was used to assess a range of DSM-5-defined psychiatric disorders and their criteria, including specific information for AN, BN, and BED diagnoses. The reliability for NESARC-III diagnoses has not been reported. Rather than ED diagnostic codes originally provided as part of the NESARC-III data set, we utilized ED diagnostic codes (see Supplemental Table 1) created by Udo & Grilo 2. The AUDADIS-5 also asked questions about age when respondents first began to experience symptoms of EDs, age of the most recent episode, and the duration of the most recent episode.
ED help-seeking behaviors
Questions regarding help-seeking focused specifically on help for low weight for AN, to stop eating large amounts of food or doing things to keep from gaining weight for BN, and to stop eating large amounts of food for BED. For each ED, respondents were asked whether they ever: 1) Talked to any kind of counselor, therapist, doctor, psychologist or any person like that to get help for your low weight; 2) Went to a self-help or support group, use a hotline or visit an internet chat room; 3) Were you a patient in any kind of hospital overnight or longer; 4) Went to an emergency room; 5) Were prescribed any medicines or drugs; and 6) Went to Overeaters Anonymous or any other 12-step group. There also was a question regarding age when they first sought any help for each ED.
Sociodemographic covariates
Respondents provided information about their sociodemographic status, including age, sex, ethnicity/race (non-Hispanic White, non-Hispanic Black, Hispanic, non-Hispanic Asian/Pacific Islander, and American Indianan/Alaska Native), marital status (categorized as married or living with someone as if married, widowed/separated/divorced, or never married) and education (categorized as less than H.S., H.S. or GED, at least some college).
Statistical Analysis
Analyses were conducted with the Statistical Analysis System (SAS) (release 9.4, 2002-2012), and accounted for NESARC-survey design by using Proc Survey procedures with Taylor series variance estimation method. For each ED, weighted means, frequencies and cross-tabulations were computed for prevalence of seeking six forms of help (specifically for ED symptoms) as well as any help for the total sample across AN, BN, and BED, by sex, and by ethnicity/race (non-Hispanic White, non-Hispanic Black, and Hispanic). Rao-Scott chi-square tests were used to analyze differences in prevalence of utilization of each form of help between men and women, non-Hispanic Whites and non-Hispanic Blacks, and non-Hispanic Whites and Hispanics. For significant omnibus chi-square tests, we compared whether the prevalence differed between non-Hispanic Whites and non-Hispanic Blacks, and non-Hispanic Whites and Hispanics using Rao-Scott chi-square tests; following previous related studies 5, 16, p < .01 was considered as significant to adjust for multiple comparisons.
Multiple logistic regression was used to calculate adjusted odds ratios (AORs) comparing odds of ever seeking any help for AN, BN, and BED by sex (women as a reference group) and by race (non-Hispanic White as a reference group), adjusting age, income, education, marital status, sex (for by ethnicity/race analysis), and ethnicity/race (for by sex analysis). For each ED, analysis of covariance (ANCOVA) was used to compare age of ED onset, years with episode, and age of first seeking help by sex and by ethnicity/race, including age, income, education, marital status, sex (for by ethnicity/race analysis), and ethnicity/race (for by sex analysis) as covariates, and a Tukey-Kramer post-hoc test was used to probe significant ethnic/racial differences.
RESULTS
Distribution of ED diagnosis in Total Sample by Sex and Ethnicity/Race
The distribution (standard error [SE]) of AN, BN, and BED diagnoses in men compared to women diagnosed was 7.5% (n = 23) vs. 92.5% (2.06%; n = 252), 14.1% (n = 12) vs. 85.9% (3.67%; n = 79), and 26.7% (n = 62) vs. 73.3% (3.10%; n = 194), respectively. The distribution of ethnicity/race in respondents diagnosed with AN, BN, and BED are as follows: Non-Hispanic Whites: 79.1% (2.41%; n = 205), 74.2% (4.01%; n = 54), 73.6% (3.06%; n = 167), respectively; Non-Hispanic Blacks: 2.8% (0.69%; n = 17), 8.7% (1.27%; n = 14), 8.6% (2.01%; n = 33), respectively; Hispanics: 8.5% (1.19%; n = 36), 12.6% (3.11%; n = 18), 12.7% (2.56%; n = 44); Other: 9.6% (2.43%; n = 17), 4.5% (1.50%; n = 5), 5.0% (1.81%; n = 12), respectively.
Lifetime Prevalence of ED Help-Seeking Across ED Diagnoses in Total Sample and by Sex and Ethnicity/Race
Table 1 summarizes lifetime prevalence of seeking six forms of help as well as any forms of help across EDs in total sample and by sex and by ethnicity/race. The prevalence (SE) estimates of ever seeking any help for AN, BN, and BED was 34.5% (2.80%), 62.6% (5.36%), and 49.0% (3.74%), respectively. Across all three EDs, the most frequently used form of help was talking to a counselor, therapist, doctor, or psychologist (28.1% [2.76%] for AN, 56.2% [4.82%] for BN, and 36.0% [3.43%] for BED), followed by use of self-help or support group (10.0% [2.37%] for AN, 33.9% [6.40%] for BN, and 29.1% [3.22%] for BED).
Table 1.
Lifetime prevalence of treatment utilization in a total sample and by sex and race who met lifetime DSM-5 criteria for anorexia nervosa (AN), bulimia nervosa (BN), and binge-eating disorder (BED).
| By Sex | By Ethnicity/Race | |||||
|---|---|---|---|---|---|---|
| Total | Men | Women | White | Black | Hispanic | |
| % (SE) | % (SE) | % (SE) | % (SE) | % (SE) | % (SE) | |
| n | n | n | n | n | n | |
| AN (n = 275) | ||||||
| Counselor/psychologist | 28.1 (2.76) | 21.3 (12.15) | 28.6 (3.01) | 30.7 (3.13) | 16.6 (8.54) | 8.9 (3.68) b |
| 73 | 4 | 69 | 61 | 3 | 4 | |
| Self-help or support group | 10.0 (2.37) | 4.2 (4.22) | 10.4 (2.56) | 12.1 (2.79) | --- | --- |
| 18 | 1 | 17 | 17 | 0 | 0 | |
| Hospitalization | 7.3 (1.48) | 22.5 (10.41) a | 6.1 (1.40) | 7.8 (1.78) | 5.9 (5.69) | 12.1 (2.97) |
| 19 | 3 | 16 | 14 | 1 | 4 | |
| Emergency room | 4.1 (1.99) | 10.7 (9.70) | 3.5 (2.07) | 2.3 (1.04) | 5.9 (5.69) | 2.3 (0.33) |
| 8 | 1 | 7 | 5 | 1 | 1 | |
| Medication | 7.8 (1.95) | 26.1 (12.39) a | 6.3 (1.93) | 7.1 (1.96) | 15.7 (8.31) | 6.7 (0.98) |
| 23 | 5 | 18 | 17 | 3 | 2 | |
| 12-step groups | 5.0 (0.90) | --- | 5.5 (1.00) | 5.8 (1.03) | --- | 1.1 (0.15) |
| 9 | 0 | 9 | 7 | 0 | 1 | |
| Any help | 34.5 (2.80) | 34.2 (12.86) | 31.2 (3.03) | 31.8 (3.22) | 19.6 (8.80) | 14.6 (3.71) b |
| 79 | 7 | 72 | 64 | 4 | 5 | |
| BN (n = 91) | ||||||
| Counselor/psychologist | 56.2 (4.82) | 64.4 (13.5) | 54.9 (5.10) | 60.7 (6.56) | 42.9 (6.68) | 41.8 (10.2) |
| 49 | 6 | 43 | 36 | 5 | 6 | |
| Self-help or support group | 33.9 (6.40) | 23.2 (14.47) | 35.7 (7.10) | 40.3 (7.17) | 12.3 (5.52) | --- |
| 26 | 2 | 24 | 21 | 2 | 0 | |
| Hospitalization | 15.7 (4.03) | 23.1 (15.22) | 14.5 (3.63) | 16.6 (5.24) | 5.4 (0.71) | 14.2 (6.79) |
| 17 | 2 | 15 | 12 | 1 | 3 | |
| Emergency room | 6.1 (1.74) | 6.4 (6.23) | 6.1 (1.69) | 2.9 (0.30) | 11.7 (1.54) | 7.2 (6.80) |
| 7 | 1 | 6 | 2 | 2 | 1 | |
| Medication | 18.4 (5.18) | 22.5 (15.1) | 17.7 (5.07) | 21.2 (6.05) | 9.1 (3.28) b | 6.5 (1.40) b |
| 18 | 2 | 16 | 14 | 2 | 1 | |
| 12-step groups | 25.3 (5.37) | 23.2 (14.47) | 25.7 (5.47) | 31.9 (6.40) | 6.3 (0.82) | --- |
| 18 | 2 | 16 | 16 | 1 | 0 | |
| Any help | 62.6 (5.36) | 64.4 (13.49) | 62.3 (5.77) | 67.4 (5.84) | 49.0 (7.46) | 44.4 (10.0)b |
| 54 | 6 | 43 | 38 | 6 | 7 | |
| BED (n = 256)1 | ||||||
| Counselor/psychologist | 36.0 (3.43) | 19.3 (5.68) a | 42.3 (4.12) | 42.3 (3.92) | 12.2 (7.67) b | 21.2 (7.10) b |
| 74 | 12 | 62 | 60 | 3 | 8 | |
| Self-help or support group | 29.1 (3.22) | 11.2 (4.64) a | 35.8 (3.83) | 35.0 (3.77) | 15.1 (8.22) | 9.2 (3.60) b |
| 62 | 6 | 56 | 53 | 3 | 4 | |
| Hospitalization | 4.85 (1.25) | 5.4 (2.98) | 4.6 (1.40) | 4.4 (1.40) | 6.9 (6.64) | 7.9 (3.99) |
| 10 | 3 | 7 | 6 | 1 | 3 | |
| Emergency room | 1.67 (1.33) | 3.6 (2.44) a | 0.9 (0.93) | 1.8 (1.80) | --- | 2.4 (0.48) |
| 3 | 2 | 1 | 2 | 0 | 1 | |
| Medication | 17.9 (2.67) | 7.5 (3.33) a | 21.8 (3.08) | 19.0 (3.17) | 16.9 (8.70) | 14.2 (5.10) |
| 44 | 5 | 39 | 33 | 4 | 6 | |
| 12-step groups | 18.0 (2.27) | 12.6 (4.09) | 20.2 (2.65) | 21.7 (2.79) | 4.5 (4.27) b | 11.8 (4.97) |
| 37 | 7 | 30 | 31 | 1 | 4 | |
| Any help | 49.0 (3.74) | 27.5 (6.29) a | 56.8 (3.99) | 57.9 (4.16) | 23.2 (8.21) b | 25.9 (7.01) b |
| 113 | 16 | 97 | 94 | 6 | 10 | |
Notes. Help-seeking was specific to low weight (AN), to stop eating large amount of food or doing things to keep from gaining weight (BN), and to stop eating large amount of food (BED). All analyses adjusted for complex survey design of NESARC-III. Analyses with the total sample and by sex included all ethnicity/race group whereas analyses by ethnicity/race only included non-Hispanic Whites, non-Hispanic Blacks, and Hispanics.
= respondents did not answer the questions about treatment utilization for BED if he/she answered the questions for BN.
= significantly different from women at p < .05 based on Rao-Scott Chi-Square test;
= significantly different from non-Hispanic White at p < .05 based on Rao-Scott Chi-Square test.
Women with a lifetime AN diagnosis reported that they primarily sought help from a counselor, therapist, doctor, or psychologist (Table 1). Men reported similar prevalence of seeking help from a counselor, therapist, doctor, or psychologist, but reported significantly higher prevalence of being hospitalized, and prescribed with medication or drugs. In BED, use of a counselor/psychologist, self-help/support group, medication, and any help were more prevalent in women than men, whereas use of emergency room was more prevalent in men than women. There were no sex differences in use of any form of help for BN. When adjusting for sociodemographic variables, the odds ever seeking any help significantly differed between men and women only for BED, with men being significantly less likely to ever seek treatment than women (Table 2); there was no significant differences in odds of seeking any help by sex for AN or BN.
Table 2.
Adjusted odds ratios (AOR) and 95% Confidence Interval (95% CI) of ever seeking any help for anorexia nervosa (AN), bulimia nervosa (BN), and binge-eating disorder (BED) by sex and by race
| AN | BN | BED | |
|---|---|---|---|
| Men vs. Women | 1.63 (0.40-7.04) | 1.26 (0.28-5.76) | 0.29 (0.13-0.63)‡ |
| Non-Hispanic Black vs. non-Hispanic White | 0.40 (0.11-1.53) | 0.75 (0.27-2.10) | 0.25 (0.11-0.56)‡ |
| Hispanic vs. non-Hispanic White | 0.30 (0.13-0.67)‡ | 1.40 (0.39-5.12) | 0.46 (0.21-0.99)† |
Notes. All analyses were adjusted for age, income, education, marital status, and sex/race.
= significant at p < .05;
= significant at p < .01.
Calculations of AORs and 95% CIs were adjusted for survey weights. Analyses with the total sample and by sex included all ethnicity/race group whereas analyses by ethnicity/race only included non-Hispanic Whites, non-Hispanic Blacks, and Hispanics.
In AN, prevalence of using a counselor/psychologist and any help was more prevalent in non-Hispanic Whites than Hispanics (Table 1). In BN, prevalence of receiving medication was lower in non-Hispanic Blacks and Hispanics than non-Hispanic Whites, and prevalence of seeking any help was also lower in Hispanics, relative to non-Hispanic Whites. In BED, use of a counselor/psychologist and any help was less prevalent in non-Hispanic Blacks and Hispanics than non-Hispanic Whites. Use of a self-help/support group was also lower in Hispanics relative to non-Hispanic Whites, and use of 12-step groups was lower in non-Hispanic Blacks than non-Hispanic Whites. When adjusting for sociodemographic variables, relative to non-Hispanic Whites, non-Hispanic Blacks reported significantly less odds of ever seeking treatment for BED (Table 2). Hispanics were significantly less likely to ever seek treatment for AN and BED, relative to non-Hispanic Whites.
Age of ED Onset, Years with Episode, and Age of First Seeking Help by Sex and by Ethnicity/Race
Men with lifetime AN reported significantly earlier age of onset and shorter years with episode than women, but similar age of first seeking any help (Table 3). Men with lifetime BN reported significantly longer years with episode than women, but they reported similar age of onset and first seeking help. Compared with women with lifetime BED, men reported significantly earlier age of onset, longer years with episode, and later age of first seeking any help.
Table 3.
Mean age (standard error) of age of onset, duration, age of first seeking any help for eating disorders by sex and by race
| By Sex | By Ethnicity/Race | ||||
|---|---|---|---|---|---|
| Men | Women | White | Black | Hispanic | |
| Anorexia nervosa (AN) | |||||
| Age of onset | 17.8 (0.06) a | 19.4 (0.12) | 17.7 (0.04) | 20.5 (0.36) b | 17.9 (0.03) b,c |
| Years with episode | 12.7 (0.18) a | 13.2 (0.20) | 13.6 (0.12) | 12.8 (0.23) | 13.7 (0.12) c |
| Age of first seeking any help | 20.0 (0.19) | 20.9 (0.32) | 19.1 (0.03) | 17.8 (0.14) b | 24.6 (0.02) bc |
| Bulimia nervosa (BN) | |||||
| Age of onset | 21.3 (1.58) | 22.3 (0.34) | 20.2 (0.72) | 20.7 (0.61) | 22.1 (0.96) b |
| Years with episode | 18.7 (0.98) a | 11.4 (0.20) | 15.1 (0.25) | 13.1 (0.38) b | 14.0 (0.34) b |
| Age of first seeking any help | 28.0 (3.10) | 24.7 (0.69) | 22.1 (0.12) | 26.7 (0.76) b | 27.5 (1.70) b |
| Binge-eating disorder (BED) | |||||
| Age of onset | 25.7 (0.42) a | 26.6 (0.59) | 23.9 (0.43) | 25.4 (0.34) b | 28.6 (0.96) bc |
| Years with episode | 13.8 (0.59) a | 12.1 (0.57) | 15.8 (0.44) | 14.8 (0.39) | 9.4 (0.48) b c |
| Age of first seeking any help | 30.8 (0.44) a | 27.0 (1.19) | 27.7 (0.17) | 26.9 (0.20) | 30.0 (0.28) bc |
Notes. Analyses for “age of onset” and “years with episode” included all respondents with positive life AN/BN/BED diagnosis whereas “age of first seeking any help” included only respondents who ever sought help. Analyses with the total sample and by sex included all ethnicity/race group whereas analyses by ethnicity/race only included non-Hispanic Whites, non-Hispanic Blacks, and Hispanics. All analyses were adjusted for age, income, education, marital status, and sex/race, as well as NESARC complex survey design.
= significantly different from women;
= significantly different from non-Hispanic White based on a Tukey-Kramer post-hoc test;
= significantly different from non-Hispanic Black based on a Tukey-Kramer post-hoc test
Hispanics reported significantly later age of AN onset and later age of first seeking any help for AN relative to non-Hispanic Whites; relative to non-Hispanic Blacks, Hispanics reported significantly younger age of AN onset, longer years with episode, and later age of first seeking any help (Table 3). Non-Hispanic Blacks reported significantly later age of AN onset but younger age of first seeking any help relative to non-Hispanic Whites. For BN, both non-Hispanic Blacks and Hispanics reported significantly shorter years of episode and later age of first seeking any help relative to non-Hispanic Whites. Age of BN onset was significantly later in Hispanics than non-Hispanic Whites. For BED, Hispanics reported significantly later age of onset, shorter years with episode, and later age of first seeking any help, relative to non-Hispanic Whites and Blacks. Non-Hispanic Blacks also reported significantly later age of onset than non-Hispanic Whites.
DISCUSSION
Using the NESARC-III data, the present study examined prevalence of ever seeking help specifically for ED-related symptoms reported by a nationally-representative sample of U.S. adults who met criteria for DSM-5 lifetime diagnoses of AN, BN, or BED. Overall, our findings suggest relatively low rates of help-seeking for ED-specific symptoms by individuals with EDs with the lowest rates being reported by those with AN. The prevalence of ever seeking some form of help for low weight was 34.5% in AN, for binge eating and extreme weight-compensatory behaviors was 62.6% in BN, and for binge eating was 49.0% in BED. Across the three EDs, the most frequent form of help-seeking was mental-health specialists (e.g., counselor, therapist, and psychologist); however, it is important to highlight that the rate was low, particularly for AN and BED where only approximately one third of respondents reported seeking help from mental-health specialists.
All other forms of treatment for AN were utilized by 4%-10% of respondents. For BN, self-help/support groups and 12-step groups were utilized most frequently after mental health specialists but still at low rates (33.9% and 25.3%, respectively). Hospitalization, emergency room, and medication were utilized the least with less than 20% of respondents with BN reporting they utilized these treatment options. For BED, self-help/support groups, medication, and 12-step groups were also reported as a source of help with 18%-29% of respondents reporting they utilized these forms of treatment (29.1%, 17.9%, and 18.0%, respectively). Emergency room and hospitalization were utilized the least with less than 5% of respondents with BED reporting they utilized these treatment options.
Compared with women with BED, men were significantly less likely to ever seek help and reported significantly older age of first seeking treatment despite significantly earlier BED onset and longer years (duration) with episode. For AN and BN, there were no significant sex differences in the odds of ever seeking treatment, although men with AN were more likely to report hospitalization and use of medication than women. Interestingly, men reported similar prevalence of seeking help from a counselor, therapist, doctor, or psychologist compared to hospitalization and use of medication. Men also reported significantly younger onset but fewer years with AN episodes and longer years with BN episodes. Such findings might perhaps be due partly to heightened stigma and shame among men, which are often reported as barriers to treatment utilization 33. For example, the stigma associated with seeking help from a therapist may cause men to delay seeking help until they require a higher level of care (e.g., hospitalization or medication). EDs are commonly portrayed as a “female disorder,” which might contribute to under-utilization or delays in help-seeking behavior in men due to their own or providers’ under-recognition of ED symptoms 34. Overall, our findings support the importance of improving efforts to engage men for earlier recognition and treatment, particularly for BED.
We also found that ethnic/racial minorities (non-Hispanic Blacks and Hispanics) were less likely to seek treatment for BED. In terms of crude prevalence, Hispanics were also less likely to seek treatment for AN and BN, relative to non-Hispanic Whites. In BN, however, odds of help-seeking were no longer significant after adjusting for sociodemographic characteristics. In terms of clinical profiles, across all EDs, Hispanic respondents reported later age of onset and first sought treatment relative to non-Hispanic White respondents. Non-Hispanic Blacks reported significantly later onset of AN and BED, and later age of first seeking help for BN relative to non-Hispanic Whites. Studies have long recognized treatment barriers among ethnically diverse populations including financial difficulties, lack of insurance, fears of being labeled, beliefs that others cannot help, and ED symptoms not being screened by health-care providers 17, 18, 35 Emerging research suggests important differences in presenting clinical characteristics both by sex 24 and by ethnicity/race 27. Our findings reinforce the importance of raising awareness of ED symptoms among ethnic/racial minorities and engaging them in treatment through non-traditional, possibly non-clinical community settings 13.
Our findings appear to contrast somewhat with those of the Marques et al. 5 study that examined ethnic/racial differences in mental health service utilization by individuals with EDs using the CPES data set. Across all three EDs and ethnic/racial groups, the prevalence of seeking any help was much lower than that of Marques et al. 5, and the differences were particularly noticeable for AN. This may be due to differences in how “treatment utilization” was defined. In the NESARC-III, the help-seeking questions were specific to the ED-related symptoms (e.g., low weight for AN, binge eating and weight compensation behaviors for BN, and binge eating for BED) whereas the CPES defined it more broadly as one or more visits to a specialty mental health or mental health provider for mental health care. Since all EDs are associated with elevated rates of other psychiatric disorders, individuals with EDs may utilize treatment for other mental health problems, which likely accounts for the higher rates reported in the Marques et al.5 study.
Strengths of our study include the analysis of the most recent large epidemiological study on DSM-5 psychiatric disorders among U.S. adults which included information on EDs and treatment utilization. This study also examined help-seeking in multiple forms (i.e., medication, psychologist, hospitalization etc.) which built on previous smaller studies that focused only on lifetime use of any mental health service 5. Limitations of this study include uncertain reliability and validity of the AUDADIS-5’s ED-related questions 36, 37. We were also unable to include cases of subthreshold BN and BED, and other specified feeding or eating disorder (OSFSD) due to the skip-out structures of the questions in the ED sections in the AUDADIS-5 (see Supplemental Table). BMI was calculated based on self-reported height and weight which may be biased, although previous research has generally reported high correlations between self-reported and objectively measured weight 38. The AUDADIS-5 was administered by lay interviewers with computer assistance, rather than by trained clinicians. The current study also did not assess nor statistically adjust for health insurance, which has significant implications for access to health care 39. Although our results are population-based estimates, the number of respondents with an ED diagnosis and seeking treatment is relatively small, and thus some estimates may be statistically less stable. The number of Non-Hispanic Black and Hispanic respondents is particularly small so further study is needed to replicate our findings, particularly for ethnic/racial differences.
Additionally, some of the categories for help-seeking are broad (i.e., counselor, therapist, doctor, or psychologist) and it is difficult to characterize the exact services that were used within each individual category. Moreover, such broad categories might obscure important disparities around, for example, whether participants sought “generalist” (e.g., primary care internal medicine) versus “specialist” care (e.g., psychiatrist or psychologist), or “specialized eating disorder treatment” (e.g., evidence-based ED-specific). For example, a yearly primary care visit or an occasional visit to a generalist counselor are likely very different than more intensive and focused care from an eating disorder specialist delivering evidence-based psychological or pharmacological treatment. Previous data suggest that Mexican-American women, compared with European-American women, were less likely to receive any professional care and if they did it was less likely to be from specialists18. Other studies suggest that primary care might be the source of care for many mental health issues in men and ethnic/racial minorities 40. The NESARC-III measure of help-seeking considered a range of potential interventions but did not specifically assess for seeking evidence-supported interventions for EDs 41. Despite such limitations in the specifics of treatment sought by the respondents, the findings clearly highlight the importance of greater awareness of EDs by generalists, PCPs, and other health care providers. Research suggests that limited knowledge about EDs currently exists among many physicians in the United States 42 and improved awareness and better recognition by both patients and health-care providers is needed to help guide patients to appropriate, evidence-based treatment options.
CONCLUSION
This study, based on a large epidemiological study of U.S. adults, provides new findings across eating disorders and highlights the relatively low rates of help-seeking for ED-specific symptoms by persons with AN, BN, and BED. The study also highlighted possible sex- and ethnic/racial disparities in help-seeking patterns for EDs. Our findings on discrepancies between age of ED onset and first age to seek help also underscore the need for improved clinical training and public health messages to facilitate earlier recognition of EDs by both health-care workers and by the public (e.g., patients, families). Implementation of regular screening for eating disorders at primary care or other generalized health service setting (e.g., community health care organizations) may be helpful to improve earlier detection. Lack of appropriate knowledge and skills to detect and refer patients with symptoms of EDs may deter physicians and other healthcare clinicians from routinely screening for EDs. Increasing efforts to educate the public and the health-care work-force about symptoms of EDs may be crucial for early detection and encouraging treatment-seeking in individuals with ED, particularly among men and ethnic/racial minorities.
Supplementary Material
Abbreviations
- AN
anorexia nervosa
- AUDADIS-5
NIAAA Alcohol Use Disorder and Associated Disabilities Interview Schedule-5
- BED
binge-eating disorder
- BN
bulimia nervosa
- ED
eating disorder
- NESARC III
National Epidemiologic Survey on Alcohol and Related Conditions III
Footnotes
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Financial support and conflict of interest disclosure: The authors declare no conflicts of interest.
References
- 1.American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders: DSM-5, 5th ed. Arlington, V.A.; 2013. [Google Scholar]
- 2.Udo T, Grilo CM. Prevalence and correlates of DSM-5-Defined eating disorders in a nationally representative sample of U.S. Adults. Biol Psychiatry. 2018. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Hudson JI, Hiripi E, Pope HG Jr., Kessler RC. The prevalence and correlates of eating disorders in the National Comorbidity Survey Replication. Biol Psychiatry. 2007;61(3):348–358. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Hoek HW. Incidence, prevalence and mortality of anorexia nervosa and other eating disorders. Curr Opin Psychiatry. 2006;19(4):389–394. [DOI] [PubMed] [Google Scholar]
- 5.Marques L, Alegria M, Becker AE, et al. Comparative prevalence, correlates of impairment, and service utilization for eating disorders across US ethnic groups: Implications for reducing ethnic disparities in health care access for eating disorders. Int J Eat Disord. 2011;44(5):412–420. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Rome ES, Ammerman S. Medical complications of eating disorders: an update. J Adolesc Health. 2003;33(6):418–426. [DOI] [PubMed] [Google Scholar]
- 7.Agh T, Kovács G, Supina D, et al. A systematic review of the health-related quality of life and economic burdens of anorexia nervosa, bulimia nervosa, and binge eating disorder. Eat Weight Disord. 2016;2(3):353–364. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Mond J, Rodgers B, Hay P, Korten A, Owen C, Beumont P. Disability associated with community cases of commonly occurring eating disorders. Aust N J Public Health. 2004;28(3):246–251. [DOI] [PubMed] [Google Scholar]
- 9.Swinbourne J, Hunt C, Abbott M, Russell J, St Clare T, Touyz S. The comorbidity between eating disorders and anxiety disorders: prevalence in an eating disorder sample and anxiety disorder sample. Aust Nz J Psychia. 2012;46 (2): 118–131. [DOI] [PubMed] [Google Scholar]
- 10.Grilo CM, White MA, Barnes RD, Masheb RM. Psychiatric disorder co-morbidity and correlates in an ethnically diverse sample of obese patients with binge eating disorder in primary care settings. Compr psychiatry. 2013;54(3):209–216. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11.Ulfvebrand S, Birgegård A, Norring C, Högdahl L, von Hausswolff-Juhlin Y. Psychiatric comorbidity in women and men with eating disorders results from a large clinical database. Psychiatry Res. 2015;230(2):294–299. [DOI] [PubMed] [Google Scholar]
- 12.Welch E, Jangmo A, Thornton LM, et al. Treatment-seeking patients with binge-eating disorder in the Swedish national registers: clinical course and psychiatric comorbidity. BMC psychiatry. 2016;16(1):163. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Franko DL, Thompson-Brenner H, Thompson DR, et al. Racial/ethnic differences in adults in randomized clinical trials of binge eating disorder. J Consult Clin Psychol. 2012;80(2):186–195. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14.Wilfley DE, Pike KM, Dohm FA, Striegel-Moore RH, Fairburn CG. Bias in binge eating disorder: How representative are recruited clinic samples? J Consult Clin Psychol. 2001;69(3):383–388. [DOI] [PubMed] [Google Scholar]
- 15.Striegel-Moore RH, Dohm FA, Kraemer HC, et al. Eating disorders in white and black women. Am J Psychiatry. 2003;160(7):1326–1331. [DOI] [PubMed] [Google Scholar]
- 16.Alegria M, Woo M, Cao Z, Torres M, Meng XL, Striegel-Moore R. Prevalence and correlates of eating disorders in Latinos in the United States. Int J Eat Disord. 2007;40 Suppl(Suppl) :S15–21. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17.Cachelin FM, Rebeck R, Veisel C, Striegel-Moore RH. Barriers to treatment for eating disorders among ethnically diverse women. Int J Eat Disord. 2001;30(3):269–278. [DOI] [PubMed] [Google Scholar]
- 18.Cachelin FM, Striegel-Moore RH. Help seeking and barriers to treatment in a community sample of Mexican American and European American women with eating disorders. Int J Eat Disord. 2006;39(2):154–61 [DOI] [PubMed] [Google Scholar]
- 19.Strother E, Lemberg R, Stanford SC, Turberville D. Eating disorders in men: underdiagnosed, undertreated, and misunderstood. Eat Disord. 2012;20(5):346–55. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 20.Weltzin TE, Weisensel N, Franczyk D, Burnett K, Klitz C, Bean P. Eating disorders in men: update. J Mens Health Gend. 2005;2:186–193. [Google Scholar]
- 21.Mitchison D, Mond J, Slewa-Younan S, Hay P. Sex differences in health-related quality of life impairment associated with eating disorder features: A general population study. Int J Eat Disord. 2013; 46(4):375–380. [DOI] [PubMed] [Google Scholar]
- 22.Striegel RH, Bedrosian R, Wang C, Schwartz S. Why men should be included in research on binge eating: results from a comparison of psychosocial impairment in men and women. Int J Eat Disord. 2012;45(2):233–240. [DOI] [PubMed] [Google Scholar]
- 23.Barry DT, Grilo CM, Masheb RM. Gender differences in patients with binge eating disorder. Int J Eat Disord. 2002;31(1):63–70. [DOI] [PubMed] [Google Scholar]
- 24.Lydecker JA, Grilo CM. Comparing men and women with binge-eating disorder and co-morbid obesity. Int J Eat Disord. 2018;51 (5):411–417. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 25.Woodside DB, Garfinkel PE, Lin E, et al. Comparisons of men with full or partial eating disorders, men without eating disorders, and women with eating disorders in the community. Am J Psychiatry. 2001;158(4):570–574. [DOI] [PubMed] [Google Scholar]
- 26.Udo T, McKee SA, White MA, Masheb RM, Barnes RD, Grilo CM. Sex differences in biopsychosocial correlates of binge eating disorder: a study of treatment-seeking obese adults in primary care setting. Gen Hosp Psychiatry. 2013;35(6):587–591. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 27.Lydecker JA, Grilo CM. Different yet similar: Examining race and ethnicity in treatment seeking adults with binge eating disorder. JConsult Clin Psychol. 2016;84(1):88–94. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28.Heeringa SG, Wagner J, Torres M, Duan N, Adams T, Berglund P. Sample designs and sampling methods for the Collaborative Psychiatric Epidemiology Studies (CPES). Int J of Methods in Psychiatr Res. 2004;13(4):221–240. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29.Heeringa SG, Berglund P. National Institutes of Mental Health (NIMH) Collaborative Psychiatric Epidemiology Survey Program (CPES) data set: integrated weights and sampling error codes for design-based analysis. Ann Arbor, University of Michigan, Survey Research Center; 2007. [Google Scholar]
- 30.Grant BF, Amsbary M, Chu A, et al. Sources and Accuracy Statement: National Epidemiologic Survey on Alcohol and Related Conditions-III (NESARC-III). Rockville, MD: National Institute on Alcohol Abuse and Alcoholism; 2014. [Google Scholar]
- 31.Grant BF, Saha TD, Ruan WJ, et al. Epidemiology of DSM-5 Drug Use Disorder: results from the National Epidemiologic Survey on Alcohol and Related Conditions-III. JAMA psychiatry. 2016;73(1):39–47. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 32.Grant BF, Goldstein RB, Chou SP, et al. The Alcohol Use Disorder and Associated Disabilities Interview Schedule-Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition Version (AUDADIS-5). Rockville, MD: National Institute on Alcohol Abuse and Alcoholism; 2011. [Google Scholar]
- 33.Thapliyal P, Hay PJ. Treatment experiences of males with an eating disorder: a systematic review of qualitative studies. Transl Dev Psychiatry. 2014;2(1):25552. [Google Scholar]
- 34.Räisänen U, Hunt K. The role of gendered constructions of eating disorders in delayed help-seeking in men: a qualitative interview study. BMJ open. 2014;4(4):e004342. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 35.Becker AE, Franko DL, Speck A, Herzog DB. Ethnicity and differential access to care for eating disorder symptoms. Int J Eat Disord. 2003;33(2):205–212. [DOI] [PubMed] [Google Scholar]
- 36.Hasin DS, Greenstein E, Aivadyan C, et al. The Alcohol Use Disorder and Associated Disabilities Interview Schedule-5 (AUDADIS-5): Procedural validity of substance use disorders modules through clinical re-appraisal in a general population sample. Drug Alcohol Depend. 2015;148:40–46. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 37.Grant BF, Goldstein RB, Smith SM, et al. The Alcohol Use Disorder and Associated Disabilities Interview Schedule-5 (AUDADIS-5): Reliability of substance use and psychiatric disorder modules in a general population sample. Drug Alcohol Depend. 2015;148:27–33. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 38.White MA, Masheb RM, Grilo CM. Accuracy of self-reported weight and height in binge eating disorder: misreport Is not related to psychological factors. Obesity. 2010;18(6):1266–1269. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 39.Cohen RA. Impact of type of insurance plan on access and utilization of health care services for adults aged 18-64 years with private health insurance: United States, 2007-2008. NCHS data brief 2010:1–8. [PubMed] [Google Scholar]
- 40.Pike KM, Dohm FA, Striegel-Moore RH, Wilfley DE, & Fairburn CG A comparison of black and white women with binge eating disorder. Am J Psychiatry. 2001; 158(9), 1455–1460. [DOI] [PubMed] [Google Scholar]
- 41.Wilson GT, Grilo CM, Vitousek KM. Psychological treatment of eating disorders. Am Psychol; 2007;62(3):199–216. [DOI] [PubMed] [Google Scholar]
- 42.Supina D, Herman BK, Frye CB, Shillington AC. Knowledge of binge eating disorder: a cross-sectional survey of physicans in the United States. Postgrad Med; 2016; 128:311–6. [DOI] [PubMed] [Google Scholar]
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