Neuromuscular Diseases, Pediatric Disorder, Quality of Life, Spinal Muscular Atrophy
Conditions
Keywords
Spinal Muscular Atrophy, Quality of Life, Neuromuscular Diseases
Brief summary
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
Detailed description
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.
Interventions
None listed
Sponsors
Istanbul Medipol University Hospital
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
2 Years to 4 Years
Healthy volunteers
No
Inclusion criteria
* Having a child with spinal muscular atrophy * Having a child between the ages of 2-4 * Accept to participate in the study
Exclusion criteria
* Lack of cooperation during work * Presence of disease other than SMA, which will prevent participation in the study
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| PedsQLTM 3.0 neuromuscular module for 2-to 4- Year-old | 5-10 minutes | 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. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| PedsQLTM 4.0 generic core scales | 5-10 minutes | 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. |
Countries
Turkey (Türkiye)
Outcome results
None listed