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肛门直肠畸形和先天性巨结肠症中与肠道功能结局及生活质量相关的社会发病率

Social Morbidity in Relation to Bowel Functional Outcomes and Quality of Life in Anorectal Malformations and Hirschsprung's Disease.

作者信息

Kyrklund Kristiina, Neuvonen Malla I, Pakarinen Mikko P, Rintala Risto J

机构信息

Department of Pediatric Surgery, Hospital for Children and Adolescents, University of Helsinki, Helsinki, Finland.

出版信息

Eur J Pediatr Surg. 2018 Dec;28(6):522-528. doi: 10.1055/s-0037-1607356. Epub 2017 Oct 23.

Abstract

BACKGROUND

Anorectal malformations (ARMs) and Hirschsprung's disease (HD) are chronic bowel conditions associated with varying degrees of fecal incontinence. We aimed to discuss the contemporary status of social morbidity associated with ARMs and HD in the long term after contemporary treatments.

MATERIALS AND METHODS

The bowel functional outcomes of our recent institutional series up to adulthood were reviewed and compared for ARMs and HD. The Rintala score was used to evaluate bowel function, which includes an assessment of the social effects of the condition. In this study, the social outcomes in our population of patients with ARMs and HD were specifically analyzed in relation to the surveyed functional outcomes, our previously collected data on quality of life (QoL) and the current literature.

RESULTS

Mild ARMs were associated with a minimal risk of social morbidity consistent with good outcomes. In severe ARMs and HD, social problems were reported steadily among all age groups studied. Impairment of domains of fecal control were present among 53 to 89% of patients with social problems, including frequent symptoms (>1/week) in up to 39%. Involuntary gas leakage contributed to social morbidity in 15 to 27%. Comparison with QoL data suggested that social morbidity experienced during childhood may continue to affect emotional domains of QoL in later life, despite improvements in bowel function by adulthood.

CONCLUSION

Patients with severe ARMs and HD are at risk of social restrictions from impairment of bowel function despite contemporary surgical treatments. However, the QoL outcomes in adulthood may be more influenced by self-perceptions of illness formed from childhood than disease-specific factors. Strategies to reduce the psychological morbidity associated with these conditions that includes parental involvement from the outset may improve outcomes.

摘要

背景

肛门直肠畸形(ARMs)和先天性巨结肠病(HD)是与不同程度大便失禁相关的慢性肠道疾病。我们旨在探讨当代治疗后长期与ARMs和HD相关的社会发病率现状。

材料与方法

回顾并比较了我们机构近期一系列直至成年期的肠道功能结局,涉及ARMs和HD。使用林塔拉评分来评估肠道功能,其中包括对该疾病社会影响的评估。在本研究中,具体分析了我们的ARMs和HD患者群体的社会结局与所调查的功能结局、我们之前收集的生活质量(QoL)数据以及当前文献之间的关系。

结果

轻度ARMs与社会发病率的最小风险相关,结局良好。在重度ARMs和HD中,在所研究的所有年龄组中均持续报告有社会问题。在有社会问题的患者中,53%至89%存在排便控制领域的损害,其中高达39%有频繁症状(>每周1次)。不自主气体泄漏导致15%至27%的社会发病率。与QoL数据的比较表明,尽管成年期肠道功能有所改善,但儿童期经历的社会发病率可能在以后的生活中继续影响QoL的情感领域。

结论

尽管有当代外科治疗,但重度ARMs和HD患者仍有因肠道功能受损而受到社会限制的风险。然而,成年期的QoL结局可能更多地受到童年时期形成的疾病自我认知的影响,而非疾病特异性因素。从一开始就包括父母参与在内的减少与这些疾病相关的心理发病率的策略可能会改善结局。

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