TAND Checklists
About the TAND-L and TAND-SQ Checklists
There are now two TAND Checklists that may be downloaded free of charge for clinical use. The TAND-Lifetime (TAND-L) Checklist is designed for clinicians to use in a clinical interview to get an idea of the lifetime presence of TAND difficulties at all TAND levels.
The new TAND-SQ is a self-report quantified checklist that individuals with TSC or their caregivers can use to document TAND difficulties. The TAND-SQ also allows for the quantification of the severity of TAND within the last month. Scroll down for more information on both TAND Checklists.
The TAND-L Checklist
Overview
The TAND Lifetime (TAND-L) Checklist is a pen-and-paper checklist that asks about all the levels of TAND, and then helps doctors and families to prioritise what to do next. The levels of TAND in the TAND-L Checklist include:
1) Behavioural difficulties,
2) Psychiatric disorders,
3) Intellectual abilities,
4) Academic performance,
5) Neuropsychological skills, and
6) Psychosocial functioning.
We published about TAND and the TAND-L Checklist in 2015 and did research with the help of many people in the TSC community to check that the checklist was understandable, comprehensive, clear and useful.
Loren Leclezio led the pilot validation of the TAND-L Checklist. The study showed good content validity, very good to excellent internal consistency and strong external validity. The TAND-L Checklist has now been translated and authorised in 19 languages. These versions are all available free of charge below.
Introduction to TAND and the TAND-L Checklist
Download a TAND-L Checklist
The TAND-SQ Checklist
Overview
The TAND-SQ (self-report, quantified) was developed in response to requests by the TSC community for a TAND checklist that they could complete themselves and that would be able to quantify the severity of TAND at any one time to help them prioritise next steps for treatment. The TAND-SQ was developed using an iterative participatory approach and was published open access in 2023. Members of the TSC community reported finding the TAND-SQ feasible and acceptable to use and found the organisation of items into TAND clusters helpful for directing future clinical steps.
There are 33 items in the TAND-SQ that make up seven natural TAND clusters. Each item is rated as having ever been present to generate cluster scores (CS). Each item is also given a severity rating (over the last month) to generate cluster severity scores (CSS) and a total TAND severity score (TTSS). We used independent clinical and research data to validate these scores in participants from the TSC Alliance Natural History Database (n=69) and the Developmental Synaptopathies Consortium Rare Diseases Clinical Research Network (RDCRN) (n=23). The findings support the internal consistency and convergent validity of the CS, CSS and TTSS of the TAND-SQ. These findings suggest that the TAND-SQ scores may be useful for guiding clinical decisions and for future research as a possible behavioural outcome measure for TAND interventions.
