Tuberous Sclerosis Associated Neuropsychiatric Disorders (TAND) and the TAND Checklist

Vries, Petrus J. de; Whittemore, Vicky; Leclezio, Loren; Byars, Anna W.; Dunn, David W.; Ess, Kevin C.; Hook, Dena; King, Bryan H.; Şahin, Mustafa; Jansen, Anna

doi:10.1016/j.pediatrneurol.2014.10.004

Cited by 260 publications

(353 citation statements)

References 38 publications

Supporting

Mentioning

313

Contrasting

Unclassified

Order By: Relevance

“…broader evaluation of all TSC-associated neuropsychiatric disorders (TAND). [3,9] We also strongly support the international recommendation to perform regular detailed neurodevelopmental and mental health assessments at key timepoints, as shown in Table 5.…”

Section: Fig 2 a Clinical Flow-chart For The Diagnosis Monitoring supporting

confidence: 72%

“…For this reason, it is very important to screen for autism spectrum disorder from early on, and to do a comprehensive diagnostic work-up if there are any concerns. The TAND Checklist [9,10] was designed as a simple pen-and-paper tool to help clinicians screen for autism spectrum disorder and other TAND.…”

Section: Fig 2 a Clinical Flow-chart For The Diagnosis Monitoring mentioning

confidence: 99%

See 1 more Smart Citation

Diagnosis, monitoring and treatment of tuberous sclerosis complex: A South African consensus response to international guidelines

et al. 2017

Self Cite

View full text Add to dashboard Cite

Gomez identified that patients with TSC had a wide range of physical manifestations across almost all organ systems, including the brain, skin, heart, eyes, kidneys and lungs, and that multi-system involvement was highly variable between patients. He also recognised (in contrast to Corresponding author: P J de Vries (petrus.devries@uct.ac.za)Tuberous sclerosis complex (TSC) is a genetic disorder with multi-system manifestations and a high burden of disease. In 2013, an international panel of TSC experts revised the guidelines for the diagnosis, surveillance and treatment of the disorder. In South Africa (SA), a local multidisciplinary group of healthcare professionals and TSC researchers reviewed the international guidelines to generate an SA consensus clinical update on the identification, diagnosis, treatment and lifelong monitoring of individuals who live with TSC. We strongly endorse dissemination and use of the international guidelines for the assessment, monitoring and treatment of TSC. In addition, we strongly support access to genetic testing and to mTOR (mammalian target of rapamycin) inhibitors to treat subependymal giant cell astrocytomas not amenable to surgery and renal angiomyolipomas larger than 3 cm, and as adjunctive treatment for refractory focal seizures. We await with interest results from mTOR inhibitor trials of skin and TSC-associated neuropsychiatric disorders (TAND). With regard to training, we recommend the inclusion of TSC in undergraduate and postgraduate medical and health sciences curricula, and the promotion of other continuing professional development events to raise awareness about TSC. We also support the development of a TSC user/carer/parent organisation to provide an informal support network for families across SA. We acknowledge that some progress has been made in recent years in SA, but much remains to be done. We hope that this SA consensus clinical update based on the international guidelines will make a positive contribution to increase knowledge and improve clinical care for all patients who live with TSC in SA, and their families.

show abstract

Section: Fig 2 a Clinical Flow-chart For The Diagnosis Monitoring supporting

confidence: 72%

Section: Fig 2 a Clinical Flow-chart For The Diagnosis Monitoring mentioning

confidence: 99%

Diagnosis, monitoring and treatment of tuberous sclerosis complex: A South African consensus response to international guidelines

et al. 2017

Self Cite

View full text Add to dashboard Cite

show abstract

“…This suggests there is a need for assessing the full impact of NF1 on all ICF domains, including limitations in activities and participation. In Tuberous Sclerosis Complex, another neurocognitive and tumor predisposition disorder, an attempt has been made to capture the burden of the disease by introducing the TAND checklist, encompassing “Tuberous sclerosis‐associated neuropsychiatric disorders.” This could serve as an inspiration for such initiatives in the field of NF1 (de Vries et al, 2015). …”

Section: Discussionmentioning

confidence: 99%

Worries and needs of adults and parents of adults with neurofibromatosis type 1

Rietman

Helden²,

Both³

et al. 2018

American J of Med Genetics Pt A

View full text Add to dashboard Cite

Neurofibromatosis type 1 (NF1) is a neurocutaneous disorder associated with lifelong tumor growth propensity and neurocognitive impairments. Although follow‐up of adults with NF1 often focuses on tumor growth, follow‐up of cognitive or social problems and other NF1‐related comorbidity is often not a part of standardized care. In order to provide optimal care services for these patients, we explored the care needs of adults with NF1. A qualitative study was performed using semi‐structured group interviews, exploring worries and care needs in medical, psychological, and socioeconomic domains, also focusing on the transition from pediatric to adult care. Four focus groups were conducted, including young adult patients, patients over age 30, and parents of young adult patients. In total, 30 patients and 12 parents participated. Data were transcribed verbatim and analyzed by computerized thematic analysis. Themes were organized using the World Health Organization International classification of functioning, disability, and health (ICF). Results indicated many and diverse worries and care needs both during the transitional period and in adulthood in medical, mental health, and socioeconomic domains. Worries could be categorized into 13 themes. Parents reported high stress levels and difficulties with their parental role. Participants expressed the need for more information, access to NF1 experts, daily living support, care for mental health and socioeconomic participation, and closer communication between health‐care providers. In conclusion, worries and needs of patients and parents underline the importance of multidisciplinary follow‐up and continuity of care during and after the transitional period. Additionally, parental stress requires more attention from care providers.

show abstract

“…TAND-tuberous sclerosis complex-associated neuropsychiatric disorders bring together these multidimensional manifestations of the disorder [9].…”

Section: Tand-тsc Associated Neuropsychiatric Disordersmentioning

confidence: 99%

Signs and Symptoms of Tuberous Sclerosis Complex

Mk¹,

Rm²,

Ps³

2017

Epilepsy J

View full text Add to dashboard Cite

Tuberous Sclerosis Associated Neuropsychiatric Disorders (TAND) and the TAND Checklist

Cited by 260 publications

References 38 publications

Diagnosis, monitoring and treatment of tuberous sclerosis complex: A South African consensus response to international guidelines

Diagnosis, monitoring and treatment of tuberous sclerosis complex: A South African consensus response to international guidelines

Worries and needs of adults and parents of adults with neurofibromatosis type 1

Signs and Symptoms of Tuberous Sclerosis Complex

Contact Info

Product

Resources

About