Patients Speak Back to One-Size-Fits-All Measures: Utilizing Qualitative Data to Assess the Fit and Function of Gold-Standard Eating Disorder Measures

Background and Purpose: Eating disorders (EDs) are complex psychosocial phenomena, spanning cultures, history, and the lifespan. While EDs have been traditionally conceptualized as affecting young, thin, cisgender, white, upper-class females, epidemiological literature has captured increasingly diverse ED populations, particularly among people of color, older populations, lower-income, higher-weight, and trans/nonbinary populations (Diemer et al., 2015; Hay et al., 2017; Mitchison et al., 2014; Mitchison et al., 2020).

Yet, ED research samples do not often reflect this diversity (Harrop et al., 2020). This sample-population mismatch has implications for the measures typically used to assess EDs. Exploring how traditional ED assessment measures translate to increasingly more diverse populations is warranted. The present study explored diverse ED patients’ experiences and critiques of three gold-standard ED scales. We aimed to assess potential threats to 1) internal validity, 2) external validity, and 3) ethical concerns when using these measures in more diverse samples.

Methods: Thirty-nine adults with a history of EDs were recruited through two treatment centers, clinician referral, and online groups. Purposive sampling (Emmel, 2010) was utilized to achieve diversity in age (range: 18-74), gender (20.5% trans/nonbinary), sexual orientation (35.7% heterosexual), race (71.8% white), and weight (Body Mass Index range 21.8-61.1). Participants completed a series of standard ED-assessment scales every two months for one year. Following each scale, participants were asked to describe their experience taking the measure and offer feedback on the measure. Qualitative responses were compared across each time point, coded, and analyzed for themes using a thematic analysis approach (Huberman, Saldana, & Miles, 2014).

Results: Regarding the Eating Disorders Examination Questionnaire 6.0, participants endorsed the following themes: 1) excluded populations/identities (e.g., post-menopausal, non-menstruating, pregnant persons, trans/nonbinary populations, higher-weight populations), 2) conflation of gender and body dysphoria, 3) fatphobic microaggressions in language, and 4) questioning the utility of reporting weight. Regarding the Clinical Impairment Assessment, participants endorsed the following themes: 1) conflation of gender and body dysphoria, 2) limitations of the scale to detect some ED behaviors, and 3) lack of attention to weight stigma. Regarding the Intuitive Eating Scale-2, participants endorsed the following themes: 1) limitations of the scale to detect restrictive ED behaviors, 2) problematic moralizing language, 3) concerns with scale sensitivity for ED patients due to pathologizing ED recovery behaviors.

Conclusions and Implications: In ED research, measures are often implemented in a one-size-fits-all fashion, assuming a thin, white, cis-female norm. As more EDs are identified in diverse populations, ensuring that ED measures are validated within these populations is critical. Allowing participants the chance to “speak back” to the measures used to assess them not only centers the patient voice, but also uplifts more marginalized patients’ voices. Findings from this study suggest that traditional ED measures may systematically exclude certain populations, utilize some problematic language, and miss some opportunities for capturing various ED behaviors. By addressing these potential threats to the scales’ validities, ED researchers have the opportunity to strengthen current assessment measures and ensure that our measures can more effectively match the diversity of our growing patient population.