University of Trieste, Trieste, Italy.
J Pediatr Gastroenterol Nutr. 2013 Jul;57(1):39-42. doi: 10.1097/MPG.0b013e31828b5fd4.
Adolescence is a tough age for patients with inflammatory bowel disease (IBD) because they transition from child to adult medicine. Although a better understanding of the experience of illness and therefore a better response to the patient's needs have often been stressed, no studies have yet investigated the paediatricians' insight into their IBD adolescent patients.
A group of adolescents (ages 12-19) diagnosed as having IBD was administered a questionnaire listing 22 items of concern. They were asked to rank each item on a 5-point scale according to the degree of effect on the quality of their everyday life. The same questionnaire was administered to a group of paediatricians experienced in treating IBD and to a group of paediatric residents. Paediatricians and residents were asked to estimate how much each item would affect the quality of an average patient's life, according to the same scale. The questionnaire was also used in a face-to-face approach, asking a paediatrician to apply the estimation to an individual patient, instead of an average imaginary one.
Fifteen paediatric gastroenterologists, 11 paediatric residents, and 28 patients (female:male = 16:12; median age 16.3 years) took part in the study. The majority of patients experienced Crohn disease (17 vs 11 with ulcerative colitis). We found only 6 items overlapping when comparing the top 10 items ranked by patients and paediatricians. The patients' number 1 concern occupies the ninth position in the paediatricians' list. The number 1 item for paediatricians is not even mentioned in the patients' top 10 list. Overall, both paediatricians' and residents' rankings were significantly higher than those given by patients.
We found a significant misalignment in the estimation of health concerns between IBD adolescent patients and their paediatricians. A better insight into IBD patients' worries and concerns is crucial for the improvement of the patient's quality of life and disease outcome.
青少年时期对于炎症性肠病（IBD）患者来说是一个艰难的时期，因为他们需要从儿科医疗过渡到成人医疗。尽管人们经常强调更好地了解疾病的体验，从而更好地满足患者的需求，但迄今为止，还没有研究调查儿科医生对其 IBD 青少年患者的了解程度。
一组被诊断患有 IBD 的青少年（年龄在 12-19 岁之间）接受了一份列出 22 个关注项目的问卷。他们被要求根据这些项目对日常生活质量的影响程度，在 5 分制上对每个项目进行排名。同样的问卷也分发给了一组有治疗 IBD 经验的儿科医生和一组儿科住院医生。儿科医生和住院医生被要求根据相同的量表估计每个项目会对平均患者的生活质量产生多大影响。该问卷还以面对面的方式使用，要求一名儿科医生将估计值应用于个体患者，而不是平均想象的患者。
15 名儿科胃肠病学家、11 名儿科住院医生和 28 名患者（女性：男性=16：12；中位年龄 16.3 岁）参与了这项研究。大多数患者患有克罗恩病（17 名与溃疡性结肠炎 11 名）。当比较患者和儿科医生排名前 10 位的项目时，我们只发现了 6 个重叠的项目。患者排名第一的关注点在儿科医生名单中位列第九。儿科医生名单中的第一项甚至没有被患者列入前 10 名。总的来说，儿科医生和住院医生的排名都明显高于患者。
我们发现 IBD 青少年患者和他们的儿科医生对健康关注点的估计存在显著差异。更好地了解 IBD 患者的担忧和关注点对于提高患者的生活质量和疾病预后至关重要。
