TANDem-1:
Empowering families through technology
Overview
The TANDem-1 project was an international multidisciplinary mobile-health project to empower families and individuals who live with TSC around the world. This project was a direct result of the feedback from our TSC stakeholders, and had three aims:
- Aim 1: Development and validation of a quantified self-report TAND Checklist (the TAND-SQ), built into a mobile app.
- Aim 2: Generation of consensus clinical recommendations for identification and treatment of TAND Clusters, to be incorporated as a toolkit in the app.
- Aim 3: Establishment of a global TAND consortium through a range of networking, capacity-building and public engagement activities.
Introduction to the TANDem-1 project
Working groups
The TAND consortium was divided into a number of working groups in order to achieve the aims of the TANDem-1 project. As can be seen in the organogram, the family representatives were foundational to the project and were represented on all the other working groups. The work of all groups was overseen by the Action Group who coordinated all activities under the supervision of Petrus de Vries (principal investigator) and Anna Jansen (co-principal investigator).
TANDem-1: Working Groups
TANDem project protocol
The first output of the project was the TANDem-1 project protocol paper which described the rationale, aims and methods of the study. This has become an important blueprint for participatory research in the TSC community.
TAND scoping review
Our second output was a paper describing a scoping review of all TAND research ever conducted. We found 230 articles published between 1987 and 2020 (animal studies = 30, case studies = 47, cohort studies = 153), with more than half published since the term TAND was coined in 2012 (118/230; 51%). Studies came from 341 individual research sites from 45 countries, the majority from the USA (26%) and the UK (15%) and only 14% from low–middle income countries (LMICs). Animal studies and case studies were of relatively high/high quality, but cohort studies showed significant variability. There were no behavioural intervention studies for TAND, and of all TAND clusters, the autism spectrum disorder–like cluster was the most widely researched (60%) and the scholastic cluster the least (27%). This scoping review formed the basis of our consensus recommendations for the identification and treatment of TAND in TSC, as well as our TAND toolkit.
Development of the TAND-SQ Checklist
For aim 1, we developed the self-report quantified TAND Checklist, known as the TAND-SQ. We used participatory methods to develop the TAND-SQ and assessed the feasibility and acceptability of the TAND-SQ with members of the TSC community. The paper version was published in 2023 and is available for use by individuals with TSC and their families.
Validation of the TAND-SQ Checklist
We then set out to validate the TAND-SQ by exploring the relationship between the cluster scores that can be generated by the TAND-SQ with scores on relevant independent clinical measures and psychiatric diagnoses. We found good evidence of reliability and validity of the TAND-SQ cluster scores and total TAND severity score.
TAND-SQ Validation
- News piece (coming soon)
Consensus recommendations for TAND
Through a detailed literature review, the TAND consortium generated consensus clinical recommendations on the management of TAND for each TAND cluster. This is a valuable resource for all clinicians working in the field of TSC as well as for families and was published in 2023.
The TAND Toolkit
The TAND consortium worked with the material from the consensus recommendations to develop a practical TAND toolkit for families. This toolkit contains information about each TAND cluster, with practical ideas on additional evaluations and services to seek for symptoms in each cluster, and evidence-informed strategies that families might be able to implement at home to address TAND cluster challenges.
[This toolkit can be accessed in the TAND Toolkit App.]
The TAND Toolkit App
The TAND-SQ and the TAND toolkit were built into a smartphone app. The TAND Toolkit App was found to be feasible and acceptable to members of the TSC community with suggestions for improvement in the areas of translations and accessibility using a computer/laptop in addition to mobile devices. This app has been updated for use in the TANDem-2 project.
Dissemination
We were very intentional during the TANDem-1 project to disseminate information about the project and our findings, not just in academic publications, but also in many meetings, conferences, and symposia. We also summarised our work in four annual reports which describe the project activities.
Celebrating participatory research on TAND
Project conclusion meeting and next step planning
The project concluded with an in-person meeting of the TAND consortium in the beautiful Mont Fleur Conference venue in Stellenbosch, in the Western Cape, South Africa. Here we consolidated our findings, planned publications, and also identified possible next steps in our collaborative research journey. This is where the seeds for TANDem-2 were sown.
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