引言近年来,脊柱裂(SB)儿童的健康相关生活质量(HRQOL)得到了更多的重视.慢性残疾被理解为影响人的生活的各个方面,家庭,和社会功能,除了疾病的特定需求。HRQOL用于评估患者的生活质量(QOL)在各个领域,包括身体和精神。回到1900年代,很少有孩子在SB幸存下来,而今天,他们几乎有正常的预期寿命。通过了解影响生活质量(QOL)的因素,可以采取更有针对性的干预措施,以最大限度地提高这些患者的心理和社会福祉。目的本研究的目的是评估立陶宛脊柱裂(SB)儿童与合并症相关的健康相关生活质量(HRQOL)。病变的水平,和流动性。目的本研究的目的是调查1999年至2012年间出生的立陶宛SB儿童的HRQOL;分析HRQOL与其合并症之间的关系,包括脑积水,ChiariII畸形,失禁,和癫痫;并确定健康变量之间的关系,病变的程度,以及HRQOL的流动性。方法这是一项针对立陶宛脊柱裂儿童的定量横断面研究,以评估HRQOL。从包括考纳斯在内的各个城市选择并采访了受试者,维尔纽斯,Marijampolè,加尔兹代,比尔赛,帕涅夫,帕兰加,和Alytus.问卷被用作测量HRQOL的工具。病变的程度,合并症,和其他健康变量是从医疗档案中获得的,并直接从患者的病史中获得。关于HRQOL的结果,我们的研究人群在情感上表现出最高的分数,medical,知识分子,和社会领域。得分最低的是娱乐,职业,环境,然后是物理域。我们还发现某些合并症,包括脑积水,癫痫,尿失禁对生活质量有负面影响。在我们的研究小组中,我们还发现,非卧床组的整体生活质量得分明显较高.然而,当将病变水平与HRQOL进行比较时,我们发现差异无统计学意义.结论在医学方面取得了积极的结果,情感,知识分子,立陶宛SB患者的社会方面,因为他们在这一领域得分很高。然而,环境和职业领域得分较低,这表明需要在这些领域进行进一步的检查。我们得出的结论是,包括脑积水和失禁在内的各种合并症对生活质量有负面影响。患有癫痫的患者具有统计学上显著较低的QOL。在我们的研究中,病变水平与QOL之间的关联没有发现显着差异。
Introduction In recent years, more emphasis has been placed on improving the health-related quality of life (HRQOL) in children with spina bifida (SB). Chronic disability is understood to impact various aspects of the person\'s life, family, and social functioning, in addition to the specific needs of the disease. The HRQOL is done to assess the patient\'s quality of life (QOL) in various domains including physical and mental. Back in the 1900s, few children survived SB, whereas today, they almost have normal life expectancy. By understanding the contributing factors to the quality of life (QOL), more targeted interventions can be put in place in order to maximize the psychological and social well-being of these patients. Aim The aim of this study is to estimate the health-related quality of life (HRQOL) in Lithuanian children with spina bifida (SB) in relation to comorbidities, level of lesions, and mobility. Objectives The objectives of this study are to investigate the HRQOL of Lithuanian children with SB born between 1999 and 2012; to analyze the relation between the HRQOL and its comorbidities, including hydrocephalus, Chiari II malformation, incontinence, and epilepsy; and to determine the relationship of health variables, the level of lesions, and mobility to the HRQOL. Methods This was a quantitative cross-sectional study on children with spina bifida across Lithuania to assess the HRQOL. Subjects were chosen and interviewed from various cities including Kaunas, Vilnius, Marijampolė, Gargždai, Biržai, Panevėžys, Palanga, and Alytus. A questionnaire was used as an instrument to measure the HRQOL. The level of lesions, comorbidities, and other health variables were obtained from the medical files and directly from the patient\'s history. Results Regarding the HRQOL, our study population showed the highest scores in the emotional, medical, intellectual, and social domains. The lowest sub-scores were in recreational, vocational, environmental, and then physical domains. We also found that certain comorbidities including hydrocephalus, epilepsy, and incontinence negatively affected the QOL. In our study group, we also found that the ambulatory group scored significantly higher in the overall QOL. However, when comparing the level of lesions to the HRQOL, we found no statistically significant difference. Conclusion Positive results were obtained regarding the medical, emotional, intellectual, and social aspects of patients with SB in Lithuania as they scored high in this domain. However, the environmental and vocational domains scored low, suggesting that further examination needs to be carried in these domains. We concluded that having various comorbidities including hydrocephalus and incontinence has negative impacts on the QOL. Patients who suffered from epilepsy had a statistically significant lower QOL. No significant difference was found in the association between the level of lesion and the QOL in our study.