Department of Public Health, Mental Health and Wellbeing Research Group, Vrije Universiteit Brussel, Brussels, Belgium.
Division of Child and Adolescent Psychiatry, Centre for Autism Research in Africa (CARA), University of Cape Town, Cape Town, South Africa.
Pediatr Neurol. 2023 Oct;147:101-123. doi: 10.1016/j.pediatrneurol.2023.07.001. Epub 2023 Jul 7.
Tuberous sclerosis complex-associated neuropsychiatric disorders (TAND) are often present but underidentified and undertreated in individuals with tuberous sclerosis complex (TSC). The clinician-completed TAND-Lifetime Checklist (TAND-L) was developed to address this identification and treatment gap. Stakeholder engagement identified the need for a TAND Checklist that can (1) be completed by caregivers or individuals with TSC and (2) quantify TAND difficulties. The aim of this study was to develop a self-report quantified TAND Checklist (TAND-SQ) and conduct feasibility and acceptability testing.
This aim was addressed in three phases: (1) development of the TAND-SQ Checklist, (2) feasibility and acceptability testing of the "near-final" TAND-SQ Checklist, and (3) preparation of the final TAND-SQ Checklist. Participants included 23 technical experts from the TAND consortium in all phases and 58 lived experts (caregivers and individuals with TSC) in phase 2. All participants completed a TAND-SQ Checklist and a checklist feedback form.
Phase 1 additions to the TAND-SQ, when compared with the TAND-L, included four new items and a quantification rating. Phase 2 showed high ratings for the "near-final" TAND-SQ Checklist on comprehensiveness, clarity, ease of use, and overall acceptability. In phase 3, questions on strengths, strategies, and a TAND Cluster Profile were added.
The TAND-SQ Checklist is presented here for use by individuals with TSC and their caregivers. The next steps as part of the TANDem project include internal and external validation of the checklist and linking of TAND Cluster Profiles generated from the checklist to evidence-informed consensus recommendations within a smartphone application.
结节性硬化症相关的神经精神障碍（TAND）在结节性硬化症（TSC）患者中经常存在，但未被识别和治疗不足。为了解决这一识别和治疗差距，临床医生完成的 TAND 终身清单（TAND-L）被开发出来。利益相关者的参与确定了需要一种 TAND 清单，该清单可以（1）由 TSC 的照顾者或个人完成，（2）量化 TAND 困难。本研究的目的是开发一种自我报告的量化 TAND 清单（TAND-SQ）并进行可行性和可接受性测试。
这一目标分三个阶段实现：（1）TAND-SQ 清单的开发，（2）“接近最终”TAND-SQ 清单的可行性和可接受性测试，以及（3）最终 TAND-SQ 清单的准备。所有阶段都包括 23 名来自 TAND 联盟的技术专家，第二阶段还包括 58 名实际专家（照顾者和 TSC 患者）。所有参与者都完成了 TAND-SQ 清单和清单反馈表。
与 TAND-L 相比，第一阶段 TAND-SQ 的增加包括四个新项目和量化评分。第二阶段，“接近最终”的 TAND-SQ 清单在全面性、清晰度、易用性和整体可接受性方面获得了很高的评价。在第三阶段，添加了关于优势、策略和 TAND 聚类概况的问题。
这里介绍了 TAND-SQ 清单，供 TSC 患者及其照顾者使用。作为 TANDem 项目的下一步，包括清单的内部和外部验证，以及从清单生成的 TAND 聚类概况与智能手机应用程序内基于证据的共识建议的链接。
