Tuberous sclerosis complex (TSC) can affect behavior, emotions, learning, memory, attention, sleep, and family life. Together, these challenges are called TSC-associated neuropsychiatric disorders, or TAND. Most people with TSC experience some TAND concerns, but studies have shown many do not receive enough assessment or treatment.
The TAND-SQ identifies concerns
The researchers studied a new checklist called the TAND-SQ. Adults with TSC can complete it themselves, or caregivers can complete it for children or adults who need help. The checklist asks whether 33 different concerns have ever occurred and how serious each concern has been during the past month.
The checklist groups concerns into areas such as autism-like behaviors, mood and anxiety, behavior control, attention and activity, thinking skills, and school skills. It also asks about the effects of TAND on people with TSC and their caregivers. Unlike the earlier TAND-L checklist, the TAND-SQ captures scores corresponding to the current severity of reported concerns.
Researchers tested the checklist
The study tested whether the TAND-SQ produces dependable and meaningful results. It included 92 people with TSC: 51 children and 41 adults. Caregivers completed 71 of the 92 checklists, while 21 adults with TSC completed their own. Researchers compared the checklist results with clinical diagnoses and widely used tests of behavior, autism features, thinking abilities, daily functioning, and quality of life.
Most sections performed well
Scores for autism-like behaviors, mood and anxiety, behavior control, attention and activity, thinking skills, and school skills generally matched related clinical diagnoses or standard test results. The overall TAND score also matched how much participants said TAND affected their lives. Only the combined eating and sleep section did not perform well in these comparisons.
The findings may improve care
The findings suggest that the TAND-SQ can help families and clinicians identify which concerns need attention first. A family could complete it before a clinic visit, during a sudden change in behavior, or after starting a treatment. The authors recommend using it at least once a year and more often when symptoms are changing. Even one reported problem may deserve further assessment or support.
The checklist does not diagnose autism, anxiety, depression, ADHD, or another condition. Instead, it helps begin conversations and identify possible needs for a full evaluation or referral. Future research must determine whether its scores can reliably track changes over time or show whether a treatment is working.
The TSC Alliance supported the study
The TSC Alliance had a direct research-support role. Sixty-nine participants came from its Natural History Database (NHD). The TSC Alliance placed the TAND-SQ in its electronic portal and recruited participants through its website, community pages, email, magazine, and a TSC Alliance-sponsored event. It also securely connected checklist responses with existing clinical information entered into the NHD by TSC Alliance staff or participating TSC Clinics and Centers of Excellence.
More research is needed
The study was small, especially the group with detailed outside testing. One complication was that some earlier clinical records were not collected at the same time as the checklist was administered, so this could have impacted the results when comparing data in those cases. Larger studies using current, independent and coordinated assessments are therefore needed. Still, this research is an important step toward helping people with TSC and their families recognize TAND concerns, prepare for medical visits, and seek more focused care.
Help the TSC Alliance accelerate TSC research by donating to the 50 Forward Fund!
Lead author: Nola Chambers, PhD, Research Officer, Child and Adolescent Psychiatry, Centre for Autism Research in Africa, University of Cape Town, South Africa
Email address: nola.chambers@uct.ac.za