Michel Hilary K, Siripong Nalyn, Noll Robert B, Kim Sandra C
Division of Pediatric Gastroenterology, Hepatology, and Nutrition, University of Pittsburgh Medical Center (UPMC) Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania, USA.
Division of Pediatric Gastroenterology, Hepatology, and Nutrition, Nationwide Children's Hospital and The Ohio State University College of Medicine, Columbus, Ohio, USA.
Crohns Colitis 360. 2020 Jul;2(3):otaa055. doi: 10.1093/crocol/otaa055. Epub 2020 Aug 17.
Children with inflammatory bowel diseases (IBDs) require primary and gastrointestinal (GI) care, but little is known about patient and family preferences for care receipt. We aimed to understand caregiver perceptions of current healthcare quality, describe barriers to receiving healthcare, and elicit caregiver and adolescent preferences for how comprehensive care ideally would be delivered.
This was an anonymous survey of caregivers of 2- to 17-year olds with IBD and adolescents with IBD aged 13-17 years at a large, free-standing children's hospital. Surveys assessed patient medical history, family demographics, perceptions of health care quality and delivery, barriers to primary and GI care, and preferences for optimal care delivery.
Two hundred and seventeen caregivers and 140 adolescents were recruited, 214 caregivers and 133 adolescents consented/assented, and 160 caregivers and 84 adolescents completed the survey (75% and 60% response rate, respectively). Mean patient age was 14 years (SD = 3); 51% male; 79% Crohn's disease, 16% ulcerative colitis, and 4% indeterminate colitis. Caregivers were primarily female (86%), Caucasian (94%), and living in a 2-caregiver household (79%). Most caregivers reported that their child's primary care physician (PCP) and GI doctor oversaw their primary care (71%) and their IBD care (94%), respectively. Caregivers were satisfied with communication with their PCP and GI providers (>90%) but did not know how well they communicated with one another (54%). Barriers to primary and GI care varied, and few caregivers (6%) reported unmet healthcare needs. Caregivers and adolescents saw PCPs and GI doctors having important roles in comprehensive care, though specific preferences for care delivery differed.
Caregivers and adolescent perspectives are essential to developing family-centered care models for children with IBD.
患有炎症性肠病（IBD）的儿童需要初级和胃肠（GI）护理，但对于患者及其家庭对护理接受的偏好了解甚少。我们旨在了解照顾者对当前医疗质量的看法，描述接受医疗保健的障碍，并引出照顾者和青少年对于理想情况下综合护理应如何提供的偏好。
这是一项针对一家大型独立儿童医院中2至17岁IBD患儿的照顾者以及13至17岁IBD青少年的匿名调查。调查评估了患者病史、家庭人口统计学、对医疗质量和提供情况的看法、初级和胃肠护理的障碍以及对最佳护理提供的偏好。
招募了217名照顾者和140名青少年，214名照顾者和133名青少年同意/表示同意，160名照顾者和84名青少年完成了调查（回复率分别为75%和60%）。患者平均年龄为14岁（标准差=3）；51%为男性；79%患有克罗恩病，16%患有溃疡性结肠炎，4%患有不确定性结肠炎。照顾者主要为女性（86%）、白种人（94%），且生活在有两名照顾者的家庭中（79%）。大多数照顾者报告称，他们孩子的初级保健医生（PCP）和胃肠科医生分别负责其初级护理（71%）和IBD护理（94%）。照顾者对与PCP和胃肠科医疗服务提供者的沟通感到满意（>90%），但不知道他们彼此之间的沟通情况如何（54%）。初级和胃肠护理的障碍各不相同，很少有照顾者（6%）报告有未满足的医疗需求。照顾者和青少年认为PCP和胃肠科医生在综合护理中发挥着重要作用，尽管对护理提供的具体偏好有所不同。
照顾者和青少年的观点对于为IBD患儿开发以家庭为中心的护理模式至关重要。
