Although eating disorders are equally prevalent across racial and socioeconomic groups, [7, 8, 10] there are limited data on the extent to which eating disorders are appropriately identified and treated among marginalized groups. In this study, we found that about 40% of youth with eating disorders did not receive the treatment recommended to them based on expert clinical treatment guidelines. Youth with eating disorders who had public insurance were significantly more racially and ethnically diverse than those with private insurance, and both factors (i.e., public insurance and race/ethnicity) were independent barriers to receiving the recommended eating disorders treatment. We also found that patients admitted to the hospital upon medical evaluation were significantly more likely to receive recommended treatment than those who were not admitted. These results highlight multiple structural barriers to care experienced by diverse youth with eating disorders.
As we hypothesized, insurance type independently predicted therapy received in our sample. Youth with public insurance had one third the odds of receiving recommended treatment compared to those with private insurance. While insurance coverage is a known barrier to intensive outpatient and residential eating disorders treatment, [11, 24] patients with public insurance may face additional barriers to eating disorders care, including finding a provider trained in evidence-based treatments for eating disorders. Family-based treatment (FBT) and cognitive behavioral therapy (CBT) are often the most effective treatments for adolescents with eating disorders, [25, 26] with FBT being the only psychosocial treatment currently meeting criteria as a Level 1 (Well Established) treatment for adolescents with AN and leading to significantly faster improvement in outcomes, fewer days in hospital due to medical complications, and better long-term outcomes [27,28,29,30,31]. Further, specialized outpatient treatment is significantly more cost-effective than generalist outpatient treatment [32]. However, access to the limited number of clinicians trained in evidence-based treatments is challenging, particularly in the public sector [26, 33, 34]. In our program, many publicly-insured patients are not able to access FBT at our institution or in the community, instead relying on therapists with limited eating disorder experience who provided non-specialized individual therapy. This places youth with eating disorders at further risk of medical complications and directly contributes to disparities in care. While there are limited data on treatment outcomes for publicly-insured youth, recent trends show a higher increase in eating disorder hospitalizations paid for by Medicaid compared to private payors [35]. These findings point towards the need for policy and/or funding changes to improve access to mental health care for eating disorders among publicly-insured youth.
Further, our study showed that after adjusting for clinical and demographic characteristics including insurance type, youth of color are still less than two thirds as likely to receive recommended treatment compared with White youth. This finding is consistent with national data about mental health care access for youth of color with other mental health diagnoses [9]. It highlights the need to examine the role of structural racism [36] in treatment of eating disorders. For example, there is a growing body of literature in other patient populations demonstrating that patient-provider racial and ethnic concordance may improve care through improving patient-reported satisfaction with care [37] and improving a patient’s working alliance with mental health providers [38]. However, it is well documented that Latinx and Black providers are underrepresented in medicine and mental health care [39, 40]. It is also possible that youth of color live in communities with fewer specialized mental health providers [9]. Additional research is needed to identify which of these factors might be impacting access to appropriate therapy for youth with eating disorders.
Outside of this study, provider bias is another structural factor that impacts mental health referrals. Although eating disorders in people of color, males, and non-binary identifying individuals are increasingly being recognized, [41, 42] for many years eating disorders were believed to occur predominantly in White female patients [43]. The effects of this bias on outcomes for youth of color with eating disorders are far reaching. While studies have shown that people of color are less likely to be screened for or receive an eating disorder diagnosis [7, 44] our study also indicates that youth of color—when identified—are less likely to receive recommended treatment. While race and insurance type are undoubtedly correlated in our healthcare system [16] and in our sample, these factors were independently associated with therapy outcome, demonstrating that insurance coverage alone cannot guarantee equity in the treatment of eating disorders and suggestive of more pervasive systemic inequity within the healthcare system.
Stigma and cultural beliefs about mental health care may contribute as additional barriers to eating disorder care for youth of color, [45] but data on the systemic barriers to care are lacking, in part, due to the historical under-recognition of eating disorders in this population [46]. As providers, it is our role to examine and address the systemic barriers that contribute to disparities in care for racially and ethnically diverse patients, and these findings highlight the need for further targeted interventions for racially/ethnically marginalized groups.
Among Latinx patients with public insurance specifically, those with AAN were significantly less likely to receive recommended treatment than those with AN. As there is no evidence that the morbidity of AAN is any lower than that of full-threshold AN, [47] barriers in access to therapy for this population could result in worse outcomes. Further, publicly-insured Latinx patients were less likely to receive recommended treatment. This is an important consideration in providing equitable eating disorder treatment to Latinx youth, as the Latinx rural population continues to grow [48].
Finally, across all models, a hospital admission for disordered eating within 30 days of intake significantly increased the likelihood of receiving recommended treatment. This has important implications for the accessibility of eating disorders treatment. While a hospital admission may be necessary for medical stabilization and transfer to an appropriate level of care, it is both costly and dangerous as a necessary pathway to treatment. Although our study did not evaluate aspects of hospitalization that may impact receipt of care, most hospitalized patients in our study underwent comprehensive evaluation by a multidisciplinary team, including psychology, social work, and nutrition, who often advocated to behavioral health systems on behalf of patients. Upon stabilization, patients were typically discharged to recommended treatment and scheduled for medical follow-up. Our finding points to a structural barrier to care for eating disorder patients that necessitates further research.
Limitations
There are several limitations to this study. First, this was a retrospective chart review conducted at single urban academic specialty program. Our sample focused on youth with malnutrition secondary to disordered eating which excluded patients without weight loss and/or those who had not fallen off their growth curves, including many patients with BED. Therefore, our findings may lack generalizability to the larger population of youth with eating disorders, where binge eating disorder is much more common [49], and certain analyses should be interpreted with caution due to the retrospective nature of data collection (e.g., preferred language was inconsistently documented). Additionally, due to our program’s academic nature, some of our participants received evidence-based therapy at no cost through participation in a federally-funded treatment trial with active recruitment over two years during the study period. Our results therefore likely underestimate the impact of public insurance on therapy type received, as many publicly-insured patients would not have otherwise had access to FBT. Second, there are limitations to the interpretation of race/ethnicity in our study. Specifically, we recognize that race is a social construct [50] and that the categories used in this study are imperfect measures of people’s identities, lived experiences, and experiences of racism. Nevertheless, we felt it important to include race in our analyses to investigate the contribution of racial/ethnic minority status to disparities in treatment access, after adjusting for other measured factors, given increased understanding about how structural racism negatively impacts health outcomes for immigrants as well as racial and ethnic minorities [51,52,53]. Third, Black patients were notably under-represented given the racial/ethnic demographics in California (2.2 vs 5.4%, respectively) [53]. Although the public insurance group was more representative of California’s Black youth (5.2%), the overall small number of Black patients in our sample did not allow for meaningful analysis of outcomes for Black youth. Their under-representation could itself suggest structural racism in the diagnosis, referral, and treatment of patients with eating disorders. Moreover, since our study included only those patients who were referred and diagnosed, it likely underestimates the effect of structural racism on access to therapy for youth of color [54]. Given the limited number of clinicians with competence in treating eating disorders, [26, 33, 34] capacity to deliver therapy in other languages is also generally limited. Finally, these findings are limited to treatment access as the primary outcome, in the absence of examining treatment outcomes (e.g., remission or symptom improvement).