Kaul Kalina, Schumann Stefan, Felder Jakob, Däbritz Jan, de Laffolie Jan
Department of General Pediatrics and Neonatology, University Children's Hospital, University Giessen, 35392 Giessen, Hesse, Germany.
Clinic for Pediatrics and Adolescent Medicine, DRK-Kinderklinik Siegen, 57072 Siegen, North Rhine-Westphalia, Germany.
Children (Basel). 2025 May 10;12(5):620. doi: 10.3390/children12050620.
: Children and adolescents with pediatric inflammatory bowel diseases (PIBD) face significant challenges, including emotional stress, social isolation, and interrupted education due to symptoms. Effective counseling and education empower these young patients and their families to actively participate in healthcare. This paper investigates the IBD needs analysis (CEDNA), focusing on counseling and transition services. The Study Group distributed questionnaires to PIBD patients and the parents of children and adolescents with PIBD across Germany, with all responses provided anonymously. We conducted a subgroup analysis based on patient age and time since diagnosis, as well as aspects of regional distribution and city size. Parents' responses were analyzed by corresponding age groups to facilitate comparison with the patients' responses. From October 2021 to April 2022, 1158 questionnaires (patients 38.9%, = 450; parents 61.1%, = 708) were completed. In the group of 16-17-year-old patients, only 14.1% ( = 239) feel well informed about transition programs (parents 6.7% of = 360). Depending on the disease duration, 2.1% to 6.9% of the patients surveyed ( = 292) feel well informed about PIBD (parents 3.3% to 7.5%, = 361). Nutritional counseling is the most requested support service (patients 49.2%, = 382; parents: service used for their children 41.9%, = 578; parents: service used for themselves 46.1%, = 575). PIBD patients, especially aged 12-17, lack knowledge and preparation for transition to adult care. While general PIBD management awareness is fair, targeted educational efforts are necessary. Trustworthy information sources and early, tailored counseling services could enhance transition experiences and improve long-term disease management and patient outcomes.
患有儿童炎症性肠病（PIBD）的儿童和青少年面临着重大挑战，包括情绪压力、社交孤立以及因症状导致的教育中断。有效的咨询和教育使这些年轻患者及其家庭能够积极参与医疗保健。本文调查了IBD需求分析（CEDNA），重点关注咨询和过渡服务。研究小组向德国各地的PIBD患者以及患有PIBD的儿童和青少年的父母分发了问卷，所有回复均为匿名。我们根据患者年龄、诊断后的时间以及区域分布和城市规模等方面进行了亚组分析。对父母的回复按相应年龄组进行分析，以便与患者的回复进行比较。2021年10月至2022年4月，共完成了1158份问卷（患者占38.9%，n = 450；父母占61.1%，n = 708）。在16 - 17岁的患者组中，只有14.1%（n = 239）觉得对过渡计划了解充分（父母中占6.7%，n = 360）。根据疾病持续时间，接受调查的患者中有2.1%至6.9%（n = 292）觉得对PIBD了解充分（父母中占3.3%至7.5%，n = 361）。营养咨询是最需要的支持服务（患者中占49.2%，n = 382；父母：为孩子使用该服务的占41.9%，n = 578；父母：为自己使用该服务的占46.1%，n = 575）。PIBD患者，尤其是12 - 17岁的患者，缺乏向成人护理过渡的知识和准备。虽然对PIBD的总体管理意识尚可，但有针对性的教育努力是必要的。可靠的信息来源以及早期、量身定制的咨询服务可以改善过渡体验，并改善长期疾病管理和患者预后。
