An observational study in Spinal Muscular Atrophy, Quality of Life and Neuromuscular Diseases, sponsored by Istanbul Medipol University Hospital. Status unknown at 1 site in Turkey. Open to participants aged 2 Years to 4 Years. Per ClinicalTrials.gov, last updated 2022-09-19.
Sponsored by Istanbul Medipol University Hospital · Observational
The aim of the investigator's study was to investigate translating the PedsQL 3.0 Neuromuscular Module for 2-to 4- Year-old and using it in clinics reliably and validity with a Turkish version of the PedsQL Generic Core (Pediatric Quality of Life Questionnare) in children with Spinal Muscular Atrophy in Turkey
The PedsQL 3.0 Neuromuscular Module for 2-to 4- year-old will be translated into Turkish by following the language translation steps. First of all, the English form will be translated into Turkish by two people who are fluent in English. Then, the forms translated by another expert in the field will be reviewed. The revised text will be translated from Turkish into English by another person with a good command of English and will be compared with the original scale by the lecturer. If a significant change in meaning is not detected, the scale will be applied to 10 parents. In case of incomprehensible questions, which are reported to be lacking in expression, the scale will be finalized after revision and corrections are made by the research team.
494 studies on the registry are indexed under Muscular Atrophy; 94 are open to participants now.
This study's planned enrollment of 55 is below the median of 72 across 139 observational studies indexed under Muscular Atrophy.
Browse Muscular Atrophy studies →Istanbul Medipol University Hospital is the lead sponsor of 350 studies on the registry; 58 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Children with spinal muscular atrophy between 2 to 4 years age.
Exclusion Criteria:
PedsQLTM 3.0 neuromuscular module for 2-to 4- Year-old
The module encompasses three scales: 1. About My/My Child's Neuromuscular Disease (17 items), 2. Communication (3 items), 3. About Our Family Resources (5 items). The scale is comprised a parent proxy-report format for children ages 2 to 4 years. Items in all forms are essentially identical but contain slightly different language for first or third person tense. The participants are asked how much of a problem each item had been during the past month. Responses are rated on a 5-point Likert scale across child self-report for children, teens, and parent proxy-reports (0 = never a problem, 1 = almost never a problem, 2 = sometimes a problem, 3 = often a problem, 4 = almost always a problem). Items are linearly transformed to a 0 to 100 scale (0 = 100, 1 = 75, 2 = 50, 3 = 25, and 4 = 0) so that higher scores indicate better HRQOL.
Time frame: 5-10 minutes
PedsQLTM 4.0 generic core scales
The 23-item PedsQLTM 4.0 Generic Core Scales encompass: 1. Physical Functioning (8 items), 2. Emotional Functioning (5 items), 3. Social Functioning (5 items), 4. School Functioning (5 items) The formats, instructions, Likert scales, and scoring methods are the same as those of the PedsQLTM 3.0 Neuromuscular Module. To create the Psychosocial Health Summary Score, the mean is computed as the sum of the items divided by the number of items answered in the Emotional, Social, and School Functioning Subscales.
Time frame: 5-10 minutes
This study is status unknown, as verified in Sep 2022. You cannot join it, but the record below documents what was studied.
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Istanbul Medipol University Hospital