Health Priorities in Adolescents With Inflammatory Bowel Disease: Physicians Versus Patients Perspectives

Cervesi, Chiara*; Battistutta, Sara; Martelossi, Stefano; Ronfani, Luca; Ventura, Alessandro*

Journal of Pediatric Gastroenterology & Nutrition:
doi: 10.1097/MPG.0b013e31828b5fd4
Original Articles: Gastroenterology
Abstract

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.

Author Information

*University of Trieste

Scuola di Dottorato in Scienze della Riproduzione e dello Sviluppo–University of Trieste

Institute for Maternal and Child Health–IRCCS “Burlo Garofolo,” Trieste, Italy.

Address correspondence and reprint requests to Chiara Cervesi, Institute for Maternal and Child Health I.R.C.C.S. “Burlo Garofolo,” Trieste 34100, Italy (e-mail: cervesi@gmail.com).

Received 25 June, 2012

Accepted 1 February, 2013

The authors report no conflicts of interest.

© 2013 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology,