Cairo Sarah B, Chiu Priscilla P L, Dasgupta Roshni, Diefenbach Karen A, Goldstein Allan M, Hamilton Nicholas A, Lo Andrea, Rollins Michael D, Rothstein David H
Women and Children's Hospital of Buffalo, 140 Hodge Street, Buffalo, NY 14222.
The Hospital for SickKids, 555 University Avenue, Toronto, Canada M5G 1X8.
J Pediatr Surg. 2018 Aug;53(8):1566-1572. doi: 10.1016/j.jpedsurg.2017.09.021. Epub 2017 Oct 7.
The provision of timely and comprehensive transition of care from pediatric to adult surgical providers for patients who have undergone childhood operations remains a challenge. Understanding the barriers to transition from a patient and family perspective may improve this process.
A cross-sectional survey was conducted of patients with a history of anorectal malformation (ARM) or Hirschsprung Disease (HD) and their families. The web-based survey was administered through two support groups dedicated to the needs of individuals born with these congenital abnormalities. Categorical variables were compared using Chi-squared and Fisher's exact test with Student's t test and ANOVA for continuous variables.
A total of 118 surveys were completed (approximately 26.2% response). The average age of patients at time of survey was 12.3years (SD 11.6) with 64.5% less than 15years old. The primary diagnosis was reported for 78.8% patients and included HD (29.0%), ARM (61.3%), and cloaca (9.7%). The average distance traveled for ongoing care was 186.6miles (SD 278.3) with 40.9% of patients traveling ≥30miles; the distance was statistically significantly greater for patients with ARM (p<0.001). With regards to ongoing symptoms, 44.1% experience constipation, 40.9% experience diarrhea, and approximately 40.9% require chronic medication for management of bowel symptoms; only 3 respondents (3.2%) reported fecal incontinence. The majority of patients, 52.7% reported being seen by a provider at least twice per year and the majority continued to be followed by a pediatric provider, consistent with the majority of the cohort being less than 18years of age. Conversations with providers regarding transitioning to an adult physician had occurred in fewer than 13% of patients. The most commonly cited barrier to transition was the perception that adult providers would be ill-equipped to manage the persistent bowel symptoms.
Patients undergoing childhood procedures for ARM or HD have a high prevalence of ongoing symptoms related to bowel function but very few have had conversations regarding transitions in care. Early implementation of transitional care plans and engagement of adult providers are imperative to transitions and may confer long-term health benefits in this patient population.
Level IV, case series with no comparison group.
为接受过儿童期手术的患者提供从儿科手术医生到成人手术医生的及时且全面的护理过渡仍是一项挑战。从患者及其家庭的角度了解过渡障碍可能会改善这一过程。
对有肛门直肠畸形（ARM）或先天性巨结肠病（HD）病史的患者及其家庭进行了一项横断面调查。基于网络的调查是通过两个致力于满足患有这些先天性异常的个体需求的支持小组进行的。分类变量使用卡方检验和费舍尔精确检验进行比较，连续变量使用学生t检验和方差分析进行比较。
共完成了118份调查问卷（回复率约为26.2%）。调查时患者的平均年龄为12.3岁（标准差11.6），64.5%的患者年龄小于15岁。78.8%的患者报告了主要诊断，包括HD（29.0%）、ARM（61.3%）和泄殖腔畸形（9.7%）。持续护理的平均行程为186.6英里（标准差278.3），40.9%的患者行程≥30英里；ARM患者的行程在统计学上显著更长（p<0.001）。关于持续症状，44.1%的患者有便秘，40.9%的患者有腹泻，约40.9%的患者需要长期用药来管理肠道症状；只有3名受访者（3.2%）报告有大便失禁。大多数患者（52.7%）报告每年至少看一次医生，并且大多数患者仍由儿科医生随访，这与大多数队列年龄小于18岁一致。不到13%的患者与医生就过渡到成人医生进行过交谈。最常提到的过渡障碍是认为成人医生没有足够的能力来管理持续的肠道症状。
接受过ARM或HD儿童期手术的患者中，与肠道功能相关的持续症状患病率很高，但很少有人就护理过渡进行过交谈。早期实施过渡护理计划并让成人医生参与对于过渡至关重要，并且可能会给这一患者群体带来长期健康益处。
四级，无比较组的病例系列。
