Department of Paediatric Surgery, Birmingham Women's and Children's Hospital, Steelhouse Lane, Birmingham, UK.
Pediatr Surg Int. 2021 Nov;37(11):1593-1599. doi: 10.1007/s00383-021-04971-6. Epub 2021 Aug 5.
This pilot study was designed to assess bowel function and quality of life (QoL) in children and adolescents with congenital colorectal malformations (CCM) during the first UK COVID lockdown period.
Changes in health were assessed through semi-structured interviews, gastrointestinal functional outcomes using Krickenbeck scoring and QoL by the modified disease-specific HAQL (Hirschsprung's disease anorectal malformation quality of life questionnaire). The State-Trait Anxiety Inventory (STAI)™ for adults was used to assess parental anxiety.
Thirty-two families were interviewed; 19 (59%) reported no change in their child's health during the lockdown, 5 (16%) a deterioration and 8 (25%) an improvement. Neither the severity of the CCM, nor the degree of bowel dysfunction, correlated with any deterioration. The HAQL score was not correlated to a change in health. Anxiety scores ranged from no anxiety to clinical concerns. Telemedicine was well accepted by 28/32 parents (88%); however, in-person appointments were preferred if there were clinical concerns.
In the follow-up of children and adolescents with CCM during the first UK lockdown using telemedicine we found that over half had stable health conditions. Patients needing additional care could not be predicted by the severity of their disease or their bowel function alone.
本研究旨在评估英国首次新冠封锁期间先天性肛肠畸形(CCM)患儿的肠道功能和生活质量(QoL)。
通过半结构式访谈评估健康变化,采用 Krickenbeck 评分评估胃肠功能结局,采用改良疾病特异性 HAQL(先天性巨结肠肛门直肠畸形生活质量问卷)评估 QoL。采用状态特质焦虑量表(STAI)™评估父母焦虑。
共访谈了 32 个家庭;19 个(59%)家庭报告孩子在封锁期间健康状况无变化,5 个(16%)家庭报告恶化,8 个(25%)家庭报告改善。CCM 的严重程度和肠功能障碍的程度均与任何恶化无关。HAQL 评分与健康变化无关。焦虑评分从无焦虑到临床关注不等。28/32 位家长(88%)接受了远程医疗;然而,如果有临床问题,他们更倾向于亲自就诊。
在使用远程医疗对英国首次封锁期间的 CCM 患儿进行随访时,我们发现超过一半的患儿健康状况稳定。仅通过疾病严重程度和肠道功能无法预测需要额外护理的患者。