Medical staff tend to underestimate the quality of life in children and adolescents with inflammatory bowel disease

Abstract

AIM: We evaluated how well medical staff or parents understood patients with inflammatory bowel disease (IBD) by comparing their evaluation of the patients' quality of life (QoL) with the patients' self-reported QoL.

METHODS: This study was carried out at Severance Children's Hospital in Seoul, Korea, in 2017. The children with IBD were recruited from August 2017 to December 2017, and they had a mean age of 16.4 (range 9.3-18.9) years. We asked the 64 children (38 boys), 58 mothers, 16 fathers, three physicians and one IBD nurse to answer the IMPACT-III questionnaire, which measures QoL, and compared the scores.

RESULTS: The intraclass correlation coefficient of the total IMPACT-III score was highest for the patient and their father (0.824) and then for the patient and their mother (0.689), physician (0.625) and IBD nurse (0.499). Parents and medical staff thought the patients' QoL was lower than the patients themselves. The differences in the IMPACT-III scores of the patients were -10.09 ± 17.86 for physicians, -9.87 ± 15.80 for mothers, -5.72 ± 17.04 for nurses and -3.81 ± 11.82 for fathers.

CONCLUSION: Parents and medical staff showed some correlation with the QoL documented by adolescent IBD patients, but tended to underestimate the levels.