Background: Recent studies suggest that children younger than 5 years of age with Spinal Muscular Atrophy (SMA) are at higher risk of internalizing problems such as anxiety and depression, and that school age children with SMA are at higher risk for anxiety compared to their peers without SMA. There has not been a study comparing child or adolescent report of anxiety symptoms with caregiver report.
Objectives: To compare self- and caregiver-report of anxiety symptoms in children with Spinal Muscular Atrophy.
Results: This study is in the process of collecting data. Screen for Child Anxiety-Related Emotional Disorders (SCARED) questionnaires were distributed to patients(ages 5-18 years) with SMA and their caregiver at the University of Virginia Children’s Neuromuscular Clinic. Thus far, six dyads have responded. Three self-reports were returned; the remaining three participants, were unable to complete the questionnaires due tohave severe neurological impairment. Two of the three self-reports rated significantly elevated social and separation anxiety symptoms. Caregiver reports underrated anxiety symptoms, with only one scoring positively on social anxiety; no other anxiety sub scores were elevated. Caregiver-reported anxiety scores for children with SMA who could not self-report were negligible, with total scores of 0-3.
Conclusions: There is limited data comparing self-reported anxiety symptoms in children or adolescents with SMA with caregiver-reported symptoms. Such data may help providers better understand the limitations of caregiver reporting of patient mental health and further support the quality of life of their patients with SMA.