Objectives: 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.
Methods: 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.
Results: 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.
Conclusions: 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.