Department of Paediatric Surgery, Royal Manchester Children's Hospital, University of Manchester, Manchester, UK.
J Pediatr Gastroenterol Nutr. 2012 Apr;54(4):510-5. doi: 10.1097/MPG.0b013e3182369dc8.
Short bowel syndrome (SBS) describes the malabsorptive state seen following extensive bowel resection. Management aims to optimise nutritional intake, promote intestinal adaptation, and prevent the development of complications. Surgical options such as autologous gastrointestinal reconstruction (AGIR) attempt to restore enteral autonomy to the patient. Although the literature focuses on the objective measurements of success following AGIR techniques, subjective assessment of its effect on the quality of life (QoL) should also be sought. Because children with SBS are reliant on caregivers, caregivers' satisfaction with surgery and their perception of the effect of AGIR on their daily lives should be assessed. This is the first report of caregiver satisfaction following AGIR in children.
All children with SBS who had AGIR between January 1999 and June 2010 were identified. A questionnaire was developed. Caregivers were asked to complete the questionnaire to rate their satisfaction with surgery and the pre- and postoperative daily care, medical needs, and subjective interpretation of QoL for their child. Data were analysed using SPSS version 18, using the Friedman nonparametric test and 2-way analysis of variance by rank. Statistical significance was set at ≤0.05.
Thirty-two children were identified. Seven assessments were done outside our centre (5 outside the UK) and were not included in the study. One patient moved to another city and was not contacted. Two children died. Twenty patients were contactable and were included in the present study. Parents were satisfied with the AGIR and saw improvements in their child's physical condition, bowel habit, and subjective interpretation of QoL postoperatively. Parents perceived significant improvements in the ease of caring and in aspects of their relationship with their child, including the quality of time spent, their enjoyment, and the level of their frustration with them.
The present study found that AGIR improved the physical well-being of the child and gave the impression of improvements on specific QoL aspects for both the child and the parents.
短肠综合征（SBS）描述的是广泛肠切除术后出现的吸收不良状态。治疗的目的是优化营养摄入、促进肠道适应，并预防并发症的发生。自体胃肠道重建（AGIR）等手术选择旨在使患者恢复肠内自主。尽管文献主要关注 AGIR 技术后客观测量的成功率，但也应寻求对其生活质量（QoL）影响的主观评估。由于患有 SBS 的儿童依赖于照顾者，因此应评估照顾者对手术的满意度以及他们对 AGIR 对日常生活影响的看法。这是首次报道儿童接受 AGIR 后的照顾者满意度。
确定了 1999 年 1 月至 2010 年 6 月期间接受 AGIR 的所有 SBS 儿童。开发了一份问卷。要求照顾者填写问卷，以评估他们对手术的满意度以及手术前后的日常护理、医疗需求以及他们对孩子主观的 QoL 解释。使用 SPSS 版本 18 进行数据分析，使用 Friedman 非参数检验和 2 路方差分析。统计显著性设置为≤0.05。
确定了 32 名儿童。7 次评估是在我们中心之外进行的（5 次在英国之外），未包括在研究中。一名患者搬到了另一个城市，没有联系到。两名儿童死亡。20 名患儿可联系，并纳入本研究。父母对 AGIR 感到满意，并看到他们的孩子术后身体状况、排便习惯和主观 QoL 解释有所改善。父母认为照顾孩子的难度和与孩子的关系方面有了显著改善，包括与孩子共度的时间质量、他们的享受程度以及他们对孩子的挫败感水平。
本研究发现，AGIR 改善了孩子的身体健康状况，并给孩子和父母带来了 QoL 方面的改善印象。
