Fragile X Caregivers Can Identify Anxiety, Study Shows

Researchers suggest a caregiver-based assessment to measure anxiety

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Caregivers can accurately recognize signs of anxiety in people with fragile X syndrome whose ability to articulate their emotional state is limited, a new study shows.

“While most people with FXS [fragile X syndrome] cannot reliably describe their internal body or emotional states to support self-reported assessment procedures, the data presented here provides evidence that caregivers can reliably identify behaviors that are meaningful for anxiety,” the researchers wrote.

“These behaviors may be represented on outcome measures that can be developed, validated, and later employed in clinical and research settings,” they added.

The study, “Observable Symptoms of Anxiety in Individuals with Fragile X Syndrome: Parent and Caregiver Perspectives,” was published in Genes.

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Chronic anxiety — feelings of worry, stress, and tension — is common among people with fragile X syndrome. Because these patients often have difficulty communicating their internal emotions and thoughts to other people, assessments of anxiety for affected individuals often rely on reports from parents and caregivers.

“Thus, it is critical to identify specific, observable behaviors caregivers attribute to anxiety, that affect quality of life and that can be reliably assessed by caregivers,” the researchers wrote.

Identifying anxiety-related behaviors that can be reliably detected by outside observers “may facilitate more accurate assessment tools, such as in the creation of quality anxiety measures for clinical evaluation and monitoring, as well as, for clinical trials,” the researchers added.

Online survey

The National Fragile X Foundation sent a link to an online survey about anxiety-related behaviors to more than 10,000 of its subscribers and shared it on its website and social media platforms.

A total of 456 family members or caregivers of people with fragile X completed the survey. The patients ranged in age from 2 to 81 years; 369 were male and 87 were female.

Among caregivers of female patients, the vast majority (more than 75%) noted three types of behaviors as indicating anxiety: refusal to do things, changes in facial expression (appearing angry, worried, or fearful), and avoidance (running away or hiding).

Repetitive or negative speech, freezing, aggression, and fidgetiness also were common anxiety-related behaviors of female fragile X patients, as reported by 40–75% of caregivers.

Refusal, aggression, and avoidance were frequently reported as anxiety symptoms by caregivers of male patients, in addition to self-injury. Increased physical activity or throwing objects were reported frequently for young male patients, but tended to be less-frequent as patients aged.

Physical anxiety symptoms

Physical symptoms related to anxiety — such as body tension, flushing, rapid heart rate, or stomachache — were reported frequently for both female and male patients.

In the survey’s free-text responses, crying was noted as a common anxiety symptom, especially in young children and female patients.

Caregivers also were asked to explain why they were confident that the reported behaviors reflected feelings of anxiety. Caregivers reported that they could tell because patients’ actions “look and feel like” anxiety, because these behaviors were triggered by specific triggers, and due to noticeable relief once the cause of anxiety was resolved.

“The high levels of supervision required for many individuals with FXS coupled with empathetic caregiving relationships can allow parents to notice anxious states through minor or major shifts in facial expressions and behavioral patterns, all within the child’s natural home environment and daily routines,” the researchers wrote.

The survey also was completed by 24 female and two male self-advocates with fragile X (ages 15–66 years). All of these individuals reported experiencing anxiety, worry, or fear, and 73% said they were able to reliably communicate these feelings using spoken words.

Their responses were generally in line with reports from caregivers. The most common self-reported manifestations of anxiety included: rapid heart rate (81%); changes in facial expression (69%); avoidance (65%); nervous activity and fidgeting (both 62%); and body tension, refusal, and “zoning out” (each 58%).

‘Patient-centered perspective’

“These first-hand accounts of anxiety in individuals with FXS are extremely rare in the literature and provide an invaluable patient-centered perspective that may to some extent generalize to experiences of others with FXS who may not be as able to express their feelings or symptoms,” the team wrote.

The scientists noted that “many symptoms reported by caregivers and self-advocates, both in quantitative data and qualitative responses, fall in line with those captured by classic … criteria for anxiety disorders.”

Additional statistical analyses showed that many of these anxiety-related symptoms tended to co-occur in a manner that is typical for anxiety.

“Caregiver accounts of these behaviors are not randomly occurring, disassociated behaviors, but rather co-occur in ways that are consistent with the clinical understanding and manifestation of anxiety in people with and without FXS,” the researchers wrote.

These findings highlight that “caregivers are capable of observing and reporting behaviors that are valid indicators of anxious states that are usually reported in self-report standardized assessments,” the team wrote.

Based on these findings, the researchers concluded that a caregiver-based assessment could be developed to reliably measure anxiety in fragile X patients.