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The BELS questionnaire: A novel screening tool for neurodevelopmental and psychiatric symptoms in pediatric
Natalie Truba1,2,3, Seth Sorensen4, Rachel Bearden4
1Department of Psychology, Nationwide Children's Hospital, Columbus, Ohio, USA.
Insights
A new questionnaire, the BELS, shows promise in identifying behavioral, emotional, learning, and social difficulties in pediatric patients with Becker and Duchenne muscular dystrophy (BDMD). This tool can help flag symptoms for further evaluation, potentially improving care for these children.
Area of Science:
- Neurology
- Pediatrics
- Psychiatry
Background:
- Pediatric patients with dystrophinopathies, including Becker and Duchenne muscular dystrophy (BDMD), frequently experience neurodevelopmental and neuropsychiatric conditions.
- Identifying these common behavioral, emotional, learning, and social difficulties is crucial for comprehensive patient care.
Purpose of the Study:
- To evaluate a novel screening questionnaire, the BELS (Behavioral, Emotional, Learning, Social), designed to detect neurobehavioral and neuropsychiatric symptoms in pediatric BDMD patients.
- To assess the validity and reliability of the BELS questionnaire against established measures.
Main Methods:
- A prospective pilot study involving 45 caregivers of pediatric BDMD patients (ages 4-19) at a specialized clinic.
- Caregivers completed the BELS questionnaire alongside four validated instruments: PSC-17, CLDQ, RCADS-OCD subscale, and BDEFS.
Main Results:
- High rates of reported behavioral (>60%), emotional (50-70%), learning (50-70%), and social (30-50%) concerns were observed.
- The BELS questionnaire demonstrated moderate to high correlations with established measures (p < .001), indicating good external validity.
- Passive suicidality was reported in 22.2% of patients.
Conclusions:
- The BELS questionnaire is a promising tool for screening neurobehavioral and neuropsychiatric symptoms in children with dystrophinopathies.
- While not a standalone diagnostic tool, BELS can identify symptoms requiring further clinical follow-up, potentially enhancing patient care and quality of life.
Introduction/Aims:
Pediatric patients with dystrophinopathies [Becker and Duchenne muscular dystrophy (BDMD)] are more likely to have neurodevelopmental and neuropsychiatric conditions. This prospective pilot study tested a novel screening questionnaire developed to identify the common behavioral (B), emotional (E), learning (L), and social (S) difficulties in BDMD.
Methods:
A total of 45 caregivers of BDMD patients (ages 4-19 years) seen at the Arkansas Children's Hospital Dystrophinopathy Clinic completed the BELS questionnaire during standard clinic visits. To establish external validity, caregivers also completed four well-validated standardized questionnaires assessing overlapping symptoms [Pediatric Symptom Checklist-17 (PSC-17), Colorado Learning Difficulties Questionnaire (CLDQ), the obsessive compulsive disorder (OCD) subscale from the Revised Children's Anxiety and Depression Scale (RCADS), and Barkley Deficits in Executive Functioning Scale (BDEFS)].
Results:
Caregivers reported high rates of behavioral (>60%), emotional (50%-70%), learning (50%-70%), and social (30%-50%) concerns, even though relatively few patients had clinical diagnoses related to these symptoms. Passive suicidality (i.e., thoughts of death) were also common (22.2%; 10/45 patients). The BELS questionnaire was moderately to highly correlated with total scores on the four well-validated questionnaires (p < .001), and BELS subscales showed specificity. A BELS score of 21 corresponded with the established PSC-17 cutoff.
Discussion:
The BELS questionnaire shows promise as a screening questionnaire to identify neurobehavioral and neuropsychiatric symptoms common in dystrophinopathy. While BELS cannot currently be used as a standalone measure to make clinical diagnoses, identification of symptoms that warrant further follow-up may improve clinical care and quality of life.

