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

Acta Paediatrica
Seung KimHong Koh

Abstract

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

References

Oct 24, 2002·Journal of Pediatric Gastroenterology and Nutrition·Anthony OtleyAnne M Griffiths
Dec 24, 2008·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Joanne Greenhalgh
Jun 22, 2010·Inflammatory Bowel Diseases·Eric I BenchimolAnne M Griffiths
Feb 5, 2011·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Jennifer Hauser KunzMegan Howard
May 20, 2011·Journal of Pediatric Gastroenterology and Nutrition·Jessica J LeeJenifer R Lightdale
Aug 26, 2011·Journal of Pediatric Gastroenterology and Nutrition·C A OgdenA G Thomas
Dec 18, 2013·Journal of Crohn's & Colitis·Helene WernerUNKNOWN Swiss IBD Cohort Study Group
Mar 26, 2014·Journal of Pediatric Gastroenterology and Nutrition·Julieta GalloCarlos Lifschitz
Apr 11, 2014·Journal of Crohn's & Colitis·Marian O'ConnorC Janneke van der Woude
Nov 13, 2014·Canadian Journal of Gastroenterology & Hepatology·Wael El-Matary
Aug 26, 2015·The American Journal of Gastroenterology·L Peyrin-BirouletJ-F Colombel
Sep 29, 2015·JAMA Pediatrics·Michael J RosenShehzad A Saeed
Mar 2, 2017·World Journal of Gastroenterology : WJG·Giorgos ChouliarasEleftheria Roma-Giannikou
Apr 13, 2017·Pediatric Gastroenterology, Hepatology & Nutrition·Seung Kim
May 17, 2017·The American Journal of Gastroenterology·Chang Kyun Lee, Gil Y Melmed

❮ Previous
Next ❯

Citations

Jan 23, 2021·Expert Review of Pharmacoeconomics & Outcomes Research·Katherine LamparykMiranda A L van Tilburg

❮ Previous
Next ❯

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.