Effectiveness of Symptom Management Application on Parental Care Ability of Children With Tourette Syndrome

Официальное название

Constructing and Evaluating the Effectiveness of an Intelligent Interaction System for Symptom Management on the Care Needs and Related Factors of Children With Tourette Syndrome and Their Parents

Обзор

This study developed a Tourette Syndrome (TS) symptom management application (APP) to improve the care needs, sleep quality, anxiety, quality of life, and parenting relationship of parents of children with Tourette Syndrome.

Подробное описание

Tourette syndrome (TS) is a common chronic neurodevelopmental disorder in children. Parents play critical roles in helping to manage their child's symptoms, leading to several issues associated with care needs and the parent-child interaction. This study adopted a randomized control study design. The investigators developed a TS symptom management APP based on symptom management theory and the relevant literature. The research subjects were parents of children with TS between 6 and 12 years old. The experimental group received TS symptom management APP intervention for four weeks. The experimental group recorded the patterns and treatments of tics at least twice a week and completed relevant readings on TS care information during these four weeks. The control group continued to receive outpatient verbal and paper health education guidance from healthcare providers. The participants in both groups were requested to complete the following questionnaires, including the care needs scale, WHOQOL-BREF, Pittsburgh Sleep Quality Index (Chinese version), Beck Anxiety Inventory (Chinese version), Parent-Child Relationship Quality Inventory, and the Yale Global Tic Severity Scale. These questionnaires were completed before the intervention and directly after the four-week intervention. The participants were completed again one month and three months after the intervention. To understand the users' satisfaction with this APP, only the participants in the experimental group were requested to complete the Inventory of Technology Acceptance Model when completing the questionnaires during the third posttest. The goal was to strengthen parents' symptom management ability and improve their psychosocial functions and children's disease severity.

Вмешательства

• Поведенческое Symptom Management APP group
  Based on symptom management theory and the relevant literature, the researcher designed a symptom management APP. The APP includes a symptom recording system, symptom management skills, and Tourette Syndrome knowledge information to facilitate parents' and children's joint learning.
• Другое health education instructions group
  To receive outpatient verbal and paper health education guidance from healthcare providers.

Первичные конечные точки

• Care needs scale for parents of children with Tourette Syndrome (CNS-PCTS) [Срок оценки: Change from baseline degree of CNS-PCTS after intervention, 1 month and 3 months.]
• Parent-Child Relationship Quality Inventory [Срок оценки: Change from baseline degree of parent-child relationship quality inventory after intervention, 1 month and 3 months.]

Вторичные конечные точки (4)

• Short version of the World Health Organization Quality of Life (WHOQOL-BREF) [Срок оценки: Change from baseline degree of WHOQOL-BREF after intervention, 1 month and 3 months.]
• Pittsburgh Sleep Quality Index (Chinese version) [Срок оценки: Change from baseline degree of Pittsburgh Sleep Quality Index (Chinese version) after intervention, 1 month and 3 months.]
• Beck Anxiety Inventory (Chinese version) [Срок оценки: Change from baseline degree of Beck Anxiety Inventory (Chinese version) after intervention, 1 month and 3 months.]
• Yale Global Tic Severity Scale(YGTSS) [Срок оценки: Change from baseline degree of YGTSS after intervention, 1 month and 3 months.]

Критерии участия

Критерии включения

• Parents of children between 6-12 years old who are diagnosed with Tourette Syndrome by pediatricians.
• Parents who are the primary caregivers
• Parents with normal cognitive functioning who can communicate in Mandarin.

Критерии исключения

1\. Children with Tourette Syndrome who are suffering from intellectual disability or critical diseases.

Критерии приведены из реестра в оригинале (на английском). Окончательную оценку соответствия проводит исследовательский центр.

Здоровые добровольцы: Да

Дизайн исследования

Распределение

Рандомизированное

Модель

Параллельные группы

Маскирование

Простое слепое

Основная цель

Организация здравоохранения

Центры проведения

Тайвань · 1 центр

• Chang Gung Memorial Hospital — Taoyuan City

Публикации

• Lee MY. Living with tics: Nursing care of pediatric tourette syndrome. Biomed J. 2022 Apr;45(2):280-285. doi: 10.1016/j.bj.2021.10.011. Epub 2021 Oct 25. PMID 34710638
• Lee MY, Wang HS, Chen CJ. Psychosocial experiences in youth with Tourette syndrome: a systematic review and meta-synthesis. Eur Child Adolesc Psychiatry. 2024 Nov;33(11):3787-3802. doi: 10.1007/s00787-023-02339-w. Epub 2023 Dec 21. PMID 38129352
• Evans GA, Wittkowski A, Butler H, Hedderly T, Bunton P. Parenting Interventions for Children with Tic Disorders: Professionals' Perspectives. J Child Fam Stud. 2016;25:1594-1604. doi: 10.1007/s10826-015-0317-1. Epub 2015 Nov 14. PMID 27110085
• Ludlow AK, Brown R, Schulz J. A qualitative exploration of the daily experiences and challenges faced by parents and caregivers of children with Tourette's syndrome. J Health Psychol. 2018 Dec;23(14):1790-1799. doi: 10.1177/1359105316669878. Epub 2016 Sep 28. PMID 27682339
• Pringsheim T, Okun MS, Muller-Vahl K, Martino D, Jankovic J, Cavanna AE, Woods DW, Robinson M, Jarvie E, Roessner V, Oskoui M, Holler-Managan Y, Piacentini J. Practice guideline recommendations summary: Treatment of tics in people with Tourette syndrome and chronic tic disorders. Neurology. 2019 May 7;92(19):896-906. doi: 10.1212/WNL.0000000000007466. PMID 31061208
• Ricketts EJ, Wolicki SB, Danielson ML, Rozenman M, McGuire JF, Piacentini J, Mink JW, Walkup JT, Woods DW, Bitsko RH. Academic, Interpersonal, Recreational, and Family Impairment in Children with Tourette Syndrome and Attention-Deficit/Hyperactivity Disorder. Child Psychiatry Hum Dev. 2022 Feb;53(1):3-15. doi: 10.1007/s10578-020-01111-4. Epub 2021 Jan 1. PMID 33385257

Идентификаторы

NCT: NCT06613126 · 202102263B0C601

Первоисточники (государственные реестры)

• ClinicalTrials.gov (NIH, США)

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