title: Pilot validation of the tuberous sclerosis-associated neuropsychiatric disorders (TAND) checklist.
abstract: BACKGROUND
  Tuberous sclerosis complex is a multisystem disorder that includes a range of tuberous sclerosis-associated neuropsychiatric disorders (TAND). The lifetime prevalence rates of TAND are very high; yet surveys suggest that the majority of individuals with tuberous sclerosis never receive appropriate assessment or treatment for TAND. To aid systematic enquiry, a TAND Checklist was developed. Here, we performed pilot validation of the TAND Checklist.
  
  
  METHODS
  Mixed methods were used across two stages. In stage 1, we gathered feedback on the Checklist from tuberous sclerosis "expert professionals" and "expert parents and caregivers." The aim was to examine face and content validity. Stage 2 involved the administration of the refined TAND Checklist to 20 parents of individuals with tuberous sclerosis concurrently with four widely used validated rating scales, to examine external validity and obtain qualitative feedback on face-to-face administration of the TAND Checklist.
  
  
  RESULTS
  Twenty professionals and 62 parents and caregivers from 28 countries participated in the pilot. The TAND Checklist demonstrated good face and content validity with high overall mean and median scores. Qualitative analysis highlighted concerns about the likely use of the TAND Checklist, suggesting that family members and individuals with tuberous sclerosis should drive usage. Stage 2 results showed moderate-to-very good external validity across TAND domain and key subdomains. Internal consistency of domains and subdomains was acceptable to very good. Ninety-three percent of all participants (93%) reported four or more lifetime TAND behavioral difficulties.
  
  
  CONCLUSIONS
  The pilot validation suggested that the TAND Checklist could provide a useful screening tool in clinical settings.
authors.affiliation: Division of Child & Adolescent Psychiatry, Department of Psychiatry and Mental Health, University of Cape Town, Cape Town, South Africa.
authors.forename: Loren
authors.initials: L
authors.lastname: Leclezio
authors.affiliation: Pediatric Neurology Unit, Department of Pediatrics, UZ Brussel, Vrije Universiteit Brussel, Brussels, Belgium.
authors.forename: Anna
authors.initials: A
authors.lastname: Jansen
authors.affiliation: National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland.
authors.forename: Vicky H
authors.initials: VH
authors.lastname: Whittemore
authors.affiliation: Division of Child & Adolescent Psychiatry, Department of Psychiatry and Mental Health, University of Cape Town, Cape Town, South Africa. Electronic address: petrus.devries@uct.ac.za.
authors.forename: Petrus J
authors.initials: PJ
authors.lastname: de Vries
mesh_terms: D000293:Adolescent; D000328:Adult; D001927:Brain Diseases / Q000150:complications* / Q000175:diagnosis; D017028:Caregivers; D057189:Checklist; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D038622:Internationality; D008297:Male; D001523:Mental Disorders / Q000150:complications* / Q000175:diagnosis; D010290:Parents; D010865:Pilot Projects; D014402:Tuberous Sclerosis / Q000150:complications* / Q000175:diagnosis*; D055815:Young Adult
keywords: TAND; academic; autism; cognition; mental health; neuropsychology; psychosocial; tuberous sclerosis complex