Document Type : original article

Authors

1 Department of Pediatrics, school of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran

2 Department of Pediatrics, school of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran.

3 Student of Research Committee, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran.

4 Assistant Professor of Psychology, Faculty of Educational Science and Psychology, Ferdowsi University of Mashhad, Mashhad, Iran.

5 Department of Pediatric Neurology, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran

10.22038/ijp.2024.75853.5382

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 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.

Keywords

  1. Gomez MR, Sampson JR, Whittemore VH. Tuberous Sclerosis Complex. Oxford University Press; 1999.
  2. De Vries PJ, Whittemore VH, Leclezio L, Byars AW, Dunn D, Ess KC, Hook D, King BH, Sahin M, Jansen A. Tuberous sclerosis associated neuropsychiatric disorders (TAND) and the TAND Checklist. Pediatr Neurol. 2015; 52(1):25-35.
  3. Curatolo P, Moavero R, de Vries PJ. Neurological and neuropsychiatric aspects of tuberous sclerosis complex. Lancet Neurol. 2015; 14(7):733-745.
  4. Joinson C, O’CALLAGHAN FJ, Osborne JP, Martyn C, Harris T, Bolton PF. Learning disability and epilepsy in an epidemiological sample of individuals with tuberous sclerosis complex. Psychol Med. 2003; 33(2):335-344.
  5. Jozwiak S, Goodman M, Lamm SH. Poor mental development in patients with tuberous sclerosis complex: clinical risk factors. Arch Neurol. 1998; 55(3):379-384.
  6. O’Callaghan FJK, Harris T, Joinson C, Bolton P, Noakes M, Presdee D, Renowden S, Shiell A, Martyn CN, Osborne JP. The relation of infantile spasms, tubers, and intelligence in tuberous sclerosis complex. Arch Dis Child. 2004; 89(6):530-533.
  7. Humphrey A, MacLean C, Ploubidis GB, Granader Y, Clifford M, Haslop M, Neville BGR, Yates JRW, Bolton PF; Tuberous Sclerosis 2000 Study Group. Intellectual development before and after the onset of infantile spasms: a controlled prospective longitudinal study in tuberous sclerosis. Epilepsia. 2014; 55(1):108-116.
  8. Kopp CMC, Muzykewicz DA, Staley BA, Thiele EA, Pulsifer MB. Behavior problems in children with tuberous sclerosis complex and parental stress. Epilepsy Behav. 2008; 13(3):505-510.