Eating disorder screen may overestimate risk in hEDS, HSD

GI-specific anxiety was strongest predictor; fear around eating also linked

Written by Andrea Lobo, PhD |

An illustration is shown of a woman eating an apple.

Gastrointestinal symptom-related anxiety and fear of negative consequences from eating may contribute to positive eating disorder screens that overestimate risk in adults with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD).

That’s according to a study in the U.K. that evaluated patients’ responses to the Sick, Control, One Stone, Fat, Food (SCOFF) questionnaire, which screens for risk of eating disorders.

These findings suggest that “clinicians should interpret SCOFF results carefully in this [patient] population as a positive eating disorder screen could reflect behaviors, concerns and consequences from gastrointestinal symptoms rather than an eating disorder,” the researchers wrote.

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The study, “Gastrointestinal Symptom-Specific Anxiety Predicts Positive SCOFF Screens in Adults With Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder and May Overestimate Eating Disorder Risk,” was published in Neurogastroenterology & Motility.

Hypermobile EDS is mainly characterized by symptoms such as joint hypermobility (a wider-than-normal range of motion in the joints), musculoskeletal symptoms, and other health issues. People with symptomatic hypermobile joints who do not fully meet the criteria for hEDS are classified as having HSD.

Disorders of gut-brain interaction (DGBI) are very common in people with hEDS and HSD. These conditions can cause gastrointestinal symptoms due to problems in how the gut and brain communicate, rather than structural damage.

Because gastrointestinal symptoms can affect eating habits, some features of DGBI may resemble those of eating disorders, such as food restriction or weight loss.

“The SCOFF is a short questionnaire commonly used to screen for eating disorders, however, it may not work perfectly in this group because gastrointestinal symptoms can affect how people answer its questions,” the researchers wrote. “The interpretation of SCOFF results in this population may be challenging.”

A team of researchers in the U.K. set out to identify factors associated with a positive SCOFF screen among adults with hEDS/HSD. The goal was to explore whether the questionnaire is suitable for this patient population.

Study examined SCOFF results in 670 adults with hEDS, HSD

To do so, the researchers conducted a secondary analysis of data collected in the CANDI-hEDS study, which was designed to assess dietary, nutritional, and gastrointestinal challenges in people with hEDS/HSD.

A total of 670 participants (mean age 40.5 years; 95.5% women) were included in the analysis. Almost half (47.6%) were overweight or obese, while 44.3% had normal weight and 8.1% were underweight.

Almost all participants met criteria for at least one DGBI. The most common was functional dyspepsia (62%), which can cause upper abdominal discomfort or pain. This was followed by irritable bowel syndrome (45%), a condition marked by abdominal pain, bloating, and changes in bowel habits; functional dysphagia, or difficulty swallowing (39%); and chronic nausea and vomiting syndrome (38%).

About one-quarter (25.8%) of participants had a positive SCOFF result, indicating elevated risk on the eating disorder screening questionnaire. Positive SCOFF results were significantly more common among younger participants (ages 18-24). Body mass index (BMI), a measure based on height and weight, was also significantly associated with SCOFF results, with the highest rate of positive screens among participants who were overweight or obese.

Other factors significantly associated with positive SCOFF results included meal and snack patterns, with the highest rates among participants eating one or two meals per day or reporting irregular snacking.

People with more severe abdominal pain, indigestion, or diarrhea, as well as those with high gastrointestinal symptom-specific anxiety, or GSA, also showed significantly higher rates of positive SCOFF results. Among the DGBIs assessed, only chronic nausea and vomiting syndrome was significantly associated with a positive SCOFF result.

Participants who met screening criteria for anxiety or depression, or who screened positive for fear of aversive consequences from eating, were also significantly more likely to have positive results. Participants who self-reported a previous diagnosis of bulimia nervosa were also more likely to have a positive SCOFF result.

GI-specific anxiety was strongest independent predictor

Statistical analyses adjusted for other potential influencing factors showed that high GSA remained the strongest independent predictor of a positive SCOFF result. Participants with high GSA had about three times the odds of a positive SCOFF result compared with those with low GSA.

Participants who met screening criteria for anxiety had about 2.5 times the odds of a positive SCOFF result, while those who screened positive for fear of aversive consequences from eating had nearly twice the odds.

In contrast, participants aged 25 or older, those who had tried three or more elimination diets, and those who screened positive for avoidant/restrictive food intake disorder (ARFID) on a separate questionnaire had significantly lower odds of a positive SCOFF result.

Overall, high GSA and fear of aversive consequences from eating strongly predicted a positive SCOFF screening outcome, suggesting “that a positive SCOFF screen may reflect concerns about gastrointestinal symptoms rather than an eating disorder,” the researchers wrote. “Our findings indicate that in hEDS/HSD with … DGBI, a positive SCOFF screen holds dual interpretation where it can reflect risk of eating disorder or arise from alternative pathways.”

Because nearly all participants had at least one DGBI, the researchers noted that the findings may not apply to people with hEDS/HSD who do not have a DGBI. Future studies should determine whether SCOFF or other screening tools can be adapted for people with gastrointestinal disorders to better distinguish eating disorders from eating behaviors driven by gastrointestinal symptoms.

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