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[Assessment of life quality in children with spina bifida]
Marianna Król1, Marcin Sibiński, Maciej Stefański
1Klinika Ortopedii i Ortopedii Dzieciecej, Uniwersytet Medyczny w Łodzi.
Insights
Children with spina bifida generally report good to very good quality of life. Factors like visual difficulties and non-ambulation can negatively impact this assessment, while living in a house improves it.
Area of Science:
- Pediatric Health
- Rehabilitation Medicine
- Quality of Life Studies
Background:
- Spina bifida significantly impacts children's lives, necessitating an understanding of factors affecting their quality of life.
- Comprehensive medical care is crucial for managing spina bifida and its associated conditions.
Purpose of the Study:
- To identify and evaluate factors influencing the quality of life in children diagnosed with spina bifida.
- To compare quality of life assessments between different age groups of children with spina bifida.
Main Methods:
- A study involving 33 children (ages 5-20) with spina bifida, divided into two age groups (5-12 and 13-20 years).
- Utilized the Health-related Quality of Life in Spina Bifida Questionnaire and a custom-designed questionnaire.
- Collected data on visual perception, ambulation, living situation, and medical care.
Main Results:
- The majority of children reported good (64%) or very good (30%) quality of life; none reported poor quality.
- Younger children averaged 158 points, while older children averaged 186 points on quality of life assessments.
- Visual perception issues in younger children and non-ambulation in older children correlated with poorer quality of life.
- Older children living in houses reported better quality of life than those in apartment blocks.
Conclusions:
- Children with spina bifida generally experience a positive quality of life, with most receiving good medical care.
- Specific challenges such as visual impairment and limited mobility can negatively affect quality of life.
- Environmental factors, like housing type, may also influence perceived quality of life in this population.
Abstract:
The aim of the study was identification and assessment of factors influencing quality of life in children with spina bifida. There were 33 children in the study (19 girls and 14 boys) in the age from 5 to 20 years. They were divided into 2 groups: first in the age from 5 to 12 years (17 patients) and second in the age from 13 to 20 years (16 patients). The Health-related Quality of Life in Spina Bifida Questionnaire and questionnaire done by us were used for the study. Younger children had average score of 158 points and older children average 186 points. In the whole group 64% of children assessed they quality of life as good, 30% as very good, 6% as average. None of our patients think that they quality of life is poor or very poor. Presence of visual perception difficulties in younger group and non-ambulation in alder children is related to poorer assessment of quality of life. Alder children that live in a house had better assessment of quality of life than children living in blocks of flats. Vast majority of children with spina bifida have good specialist medical care. Most common concomitant diseases are hydrocephalus and neurogenic urinary bladder.
