Ghazaleh Talati; Mehran Beiraghi Toosi; Reza Nejad Shahrokh Abadi; Farah Ashrafzadeh; Javad Akhoondian; Shahrbanoo Aali; Sheyla Kianifar; Shima Imannezhad; Narges Hashemi
Abstract
Background: Tuberous Sclerosis Complex is an autosomal dominant heterogeneous disease that mostly affects the skin and nervous system. The goal of this study was to provide a framework ...
Read More
Background: Tuberous Sclerosis Complex is an autosomal dominant heterogeneous disease that mostly affects the skin and nervous system. The goal of this study was to provide a framework for addressing these patients' psychological and behavioral issues, as well as the therapy and management of these aspects.
Methods: As a pilot study for this investigation, 25 patients with Tuberous Sclerosis were assessed. The presence of psychological disorders in these patients was assessed using the TAND (Tuberous Sclerosis Associated Neuropsychiatric Disorders) checklist. The checklist was translated into Persian first, then back into English, and finally verified by the designer of the original checklist. Interviews with the patients' parents took place twice a week with the help of a caregiver, and the checklist was used to analyze the data.
Results: A high correlation was found between the parents' (or caregivers') evaluations of the checklist during the first and second distributions (with a Pearson value of 0.99 and P-value of 0.001). The coefficient of correlation for question eight was -0.76, indicating an inverse correlation. According to the parents' evaluation, the two-stage distribution of this checklist had a strong and respectable reliability with a Cronbach's alpha of 0.79.
Conclusion: Parents and faculty members generally view the reliability and repeatability of all questions in a satisfactory manner as complete and credible from a position of solidarity.
