Evidence map›Paper›PMID 36362764›Full record

ArticleJournal of clinical medicine2022

Tuberous Sclerosis Complex Patients' Needs and Difficulties-Results of TAND Questionnaire Analysis in Polish Adult Population.

Anna B Marcinkowska, Sergiusz Jóźwiak, Agnieszka Tarasewicz, Alicja Dębska-Ślizień, Edyta Szurowska

Open access · goldAbstract read
In one paragraph

Article in Journal of clinical medicine, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
1.5field-weighted citation impact, top 17% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed, 13 citations in OpenAlex.

  1. Article
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors at 2 institutions in 1 country.

Anna B MarcinkowskaApplied Cognitive Neuroscience Lab, Department of Human Physiology, Medical University of Gdansk, Tuwima Str. 15, 80-210 Gdansk, Poland.ORCID 0000-0002-8331-208X
Sergiusz JóźwiakThe Children's Memorial Health Institute, 04-736 Warsaw, Poland.ORCID 0000-0003-3350-6326
Agnieszka TarasewiczDepartment of Nephrology, Transplantology and Internal Diseases, Faculty of Medicine, Medical University of Gdansk, 80-210 Gdansk, Poland.
Alicja Dębska-ŚlizieńDepartment of Nephrology, Transplantology and Internal Diseases, Faculty of Medicine, Medical University of Gdansk, 80-210 Gdansk, Poland.ORCID 0000-0001-8210-8063
Edyta Szurowska2nd Department of Radiology, Medical University of Gdansk, 80-210 Gdansk, Poland.ORCID 0000-0002-7042-4381
Gdańsk Medical University · PLChildren's Memorial Health Institute · PL

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionTuberous Sclerosis Complex (TSC) is a rare genetic disease. Around 90% of individuals with TSC present some neuropsychiatric manifestations (TSC-associated neuropsychiatric disorders, TAND). To date, none of the studies have focused on the TAND profile of the adult population. Thus, the aim of the study was to describe their potential specific needs and difficulties, including differences in cohorts with or without epilepsy and/or intellectual disability.

methodThe Polish version of the TAND Checklist was used for assessment of individuals with TSC. Participants had to meet the criteria for diagnosis of TSC. One hundred adult participants (forty-eight males/ fifty-two females; mean age 32.33 ± 11.29) were enrolled in the study. Epilepsy was present in 71% of patients; intellectual disability occurred in a total of 37%.

resultsOnly 11% of individuals received complete TAND features examination in the past. Moreover, 91.5 of the subjects had four and more TAND symptoms. Intellectually disabled patients and those with epilepsy had more neuropsychiatric problems than epilepsy-free subjects.

conclusionsFindings reveal that TANDs are common in adults with TSC and are underdiagnosed. Most individuals present several behavioural and cognitive problems. Among psychiatric disorders, the most common are ASD, depression, and anxiety disorder. TAND screening should be widely disseminated and applied in clinical practice for early identification, prevention, and rehabilitation of their difficulties. TAND is one of the most significant issues affecting the quality of life of TSC patients and their carers.

Indexed as

neuropsychiatric assessmenttuberous sclerosis complextuberous-sclerosis-complex-associated neuropsychiatric disorders

Identifiers

PMID36362764
PMCPMC9658121
OpenAlexW4308333060

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.