Impact of Motor and Oral Motor Function on Quality of Life in Children With Type I Spinal Muscular Atrophy
Trial Snapshot
- Phase
- Not Applicable
- Status
- Completed
- Sponsor
- Enrollment
- 23
- Locations
- 1
- Primary Endpoint
- Neuro-sensory Motor Developmental Assessment
Study Overview
Brief Summary
The aim of this study is to investigate the impact of motor and oral motor functions on the quality of life in children aged 2-4 years diagnosed with Spinal Muscular Atrophy (SMA) Type I. In the study, the Neuro-Sensory-Motor Developmental Assessment (NSMDA) was used to evaluate motor functions, the Functional Oral Intake Scale (FOIS) to assess oral motor function, the Behavioral Pediatric Feeding Assessment Scale (BPFAS) to evaluate children's attitudes towards feeding, and the Pediatric Quality of Life Inventory (PedsQL) Neuromuscular Module to assess quality of life.
Study Design
- Study Type
- Observational
- Observational Model
- Other
- Time Perspective
- Cross Sectional
Eligibility Criteria
- Ages
- 2 Years to 4 Years (Child)
- Sex
- All
- Accepts Healthy Volunteers
- No
Inclusion Criteria
- •Diagnosed with Spinal Muscular Atrophy Type I
- •Being between the ages of 2-4
- •Families volunteering to participate in the study
Exclusion Criteria
- •Accompanied by another chronic disease other than SMA
- •The mother or father has a cognitive problem that prevents them from expressing themselves
- •The mother or father is illiterate
Outcomes
Primary Outcomes
Neuro-sensory Motor Developmental Assessment
Time Frame: Once, beginning of the study
The test used to assess children's development levels evaluates the child's development in six parameters: gross motor function, fine motor function, neurological status, infant movement patterns, postural development and sensory-motor function (tactile, proprioceptive, ocular and vestibular systems) on a scale of 1 to 5. High scores are interpreted as motor dysfunction.
Functional Oral Intake Scale
Time Frame: Once, beginning of the study
It is a scale consisting of a total of 7 levels and two sections, developed by Crary et al. to indicate the functional oral intake of patients with dysphagia. A higher score indicates a better nutritional level.
Behavioral Pediatrics Feeding Assessment Scale
Time Frame: Once, beginning of the study
The scale used to determine eating problems in children evaluates both the child's nutritional status and the parents' feelings about the child's nutritional status. It consists of 35 items in total and is scored from 1 to 5. High scores indicate problematic eating behaviors and habits.
Secondary Outcomes
- Pediatric Quality of Life Inventory(Once, beginning of the study)
Investigators
Zeynep HOŞBAY
Prof
Biruni University