Impact of Covid-19 Pandemic on Children With Neuromuscular Disease and Their Parents in Turkey: Parent Perspective

Completed

• Conditions: Neuromuscular Diseases
• Interventions: Other: survey

• Registration Number: NCT05771727
• Lead Sponsor: Hacettepe University

Brief Summary

Parents of children with neuromuscular disease have been already at risk of depression, anxiety and burden. Additionally, the daily lives of children with neuromuscular disease and their parents have been significantly affected by the COVID-19 pandemic. Therefore, this study investigated parents' perspective on the effect of the COVID-19 pandemic on children with neuromuscular diseases and themselves.

Detailed Description

The 55-item survey created by the researchers was applied online to determine the psychological and physical effects of COVID-19 on neuromuscular patients and their families. This survey also included the Content of the 9-Item Caregiver COVID-19 Limitations Scale (CCLS-9).

Study Timeline

• Study Start: 2021-07-01
• Primary Completion: 2021-08-01
• Study Completion: 2021-10-01
• Status Verified: 2023-03
• Study First Submitted: 2023-03-14
• Study First Submitted QC: 2023-03-14
• Last Update Submitted: 2023-03-14
• Study First Posted: 2023-03-16
• Last Update Posted: 2023-03-16

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 134

Inclusion Criteria

• taking care for a child with NMD whose age was between 0-18 years,
• having the ability to read and write Turkish language,
• having access to phone or e-mail,
• being volunteer.

Exclusion Criteria

• having a child who have an additional diagnosis besides NMD and taking care of any other person in the family.

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
Parents of children with pediatric neuromuscular diseases	survey	Parents of a total of 169 children with pediatric neuromuscular diseases, including 63 Duchnenne Muscular Dystrophy, 53 Spinal Muscular Atrophy and 18 other pediatric neuromuscular diseases (Congenital Muscular Dystrophy, Hereditary Motor and Sensory Neuropathy, Becker Muscular Dystrophy, Limb-Girdle Muscular Dystrophy, etc.) were included in the study

Primary Outcome Measures

Name	Time	Method
The questionnaire which created by the researchers	30 minutes	The 55-item survey created by the researchers was applied online to determine the psychological and physical effects of COVID-19 on neuromuscular patients and their families.

Secondary Outcome Measures

Name	Time	Method
Content of the 9-Item Caregiver COVID-19 Limitations Scale (CCLS-9)	5 minutes	This scale consists of 9 items and has a scoring system between 1-10 for each item which is chosen by the caregiver. According to the CCLS-9 scale, the lowest anxiety, stress or burden of the caregiver scored as 1 while the highest level was 10.

Trial Locations

Locations (1)

Hacettepe University; 🇹🇷 Ankara, Turkey