Impact of Covid-19 Pandemic on Children With Neuromuscular Disease and Their Parents in Turkey: Parent Perspective
1 other identifier
observational
134
1 country
1
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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P50-P75 for all trials
Started Jul 2021
Shorter than P25 for all trials
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
Study Start
First participant enrolled
July 1, 2021
CompletedPrimary Completion
Last participant's last visit for primary outcome
August 1, 2021
CompletedStudy Completion
Last participant's last visit for all outcomes
October 1, 2021
CompletedFirst Submitted
Initial submission to the registry
March 14, 2023
CompletedFirst Posted
Study publicly available on registry
March 16, 2023
CompletedMarch 16, 2023
March 1, 2023
1 month
March 14, 2023
March 14, 2023
Conditions
Outcome Measures
Primary Outcomes (1)
The questionnaire which created by the researchers
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.
30 minutes
Secondary Outcomes (1)
Content of the 9-Item Caregiver COVID-19 Limitations Scale (CCLS-9)
5 minutes
Study Arms (1)
Parents of children with pediatric neuromuscular diseases
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
Interventions
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).
Eligibility Criteria
Parents of children with pediatric neuromuscular diseases
You may qualify if:
- 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.
You may not qualify if:
- having a child who have an additional diagnosis besides NMD and taking care of any other person in the family.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (1)
Hacettepe University
Ankara, 06680, Turkey (Türkiye)
MeSH Terms
Conditions
Interventions
Condition Hierarchy (Ancestors)
Intervention Hierarchy (Ancestors)
Study Design
- Study Type
- observational
- Observational Model
- FAMILY BASED
- Time Perspective
- PROSPECTIVE
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- Physiotherapist
Study Record Dates
First Submitted
March 14, 2023
First Posted
March 16, 2023
Study Start
July 1, 2021
Primary Completion
August 1, 2021
Study Completion
October 1, 2021
Last Updated
March 16, 2023
Record last verified: 2023-03