The Quality of Life of Children with Myelomeningocele: A Cross-Sectional Preliminary Study

被引：5

作者：

Rozensztrauch, Anna ^{[1
]}

Iwanska, Magdalena ^{[1
]}

Baglaj, Maciej ^{[2
]}

机构：

[1] Wroclaw Med Univ, Dept Pediat, Div Neonatol, PL-50367 Wroclaw, Poland

[2] Wroclaw Med Univ, Dept Pediat, Div Propaedeut Pediat & Rare Disorders, PL-50367 Wroclaw, Poland

来源：

INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH | 2021年 / 18卷 / 20期

关键词：

quality of life; myelomeningocele; comorbidities; SPINA-BIFIDA; ADOLESCENTS; HYDROCEPHALUS; ASSOCIATION; EXPERIENCE; OUTCOMES; PARENTS; FAMILY; IMPACT;

D O I：

10.3390/ijerph182010756

中图分类号：

X [环境科学、安全科学];

学科分类号：

08 ; 0830 ;

摘要：

Objectives: To investigate the relationship between the defects and symptoms caused by myelomeningocele (MMC) and quality of life. Design: A cross-sectional questionnaire survey. Methods: The subjects were 52 parents of children with MMC. Structured questionnaires were used: the Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL(TM) 4.0) and a Study-Specific Questionnaire (SSQ). Results: The overall PedsQL(TM) 4.0 score was 56.4 (SD & PLUSMN; 14.7). A strong, significant negative correlation was found between the children's age and emotional functioning. Functioning in this area deteriorated with age by a mean of 1.5 points per year of age. Children with no hydrocephalus functioned significantly better than those with this defect in the physical, social, and school areas (p < 0.05). Foot deformities significantly (p = 0.033) adversely affected the children's physical functioning. Living in a single-parent family had no statistically significant impact on functioning in any of the areas analyzed (p > 0.05). Conclusion: Understanding the QoL of children with MMC and identifying its determinants may help in planning interventions to minimize the adverse impact of the illness.

引用

页数：10

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