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Intern Med J. 2019 Nov 9. doi: 10.1111/imj.14683. [Epub ahead of print]

Quality of Care in Inflammatory Bowel Disease: Actual Health Service Experiences Fall Short of the Standards.

Author information

1
School of Psychology, Deakin University, Melbourne, Australia.
2
Crohn's & Colitis Australia, Melbourne, Australia.
3
School of Health Sciences, Swinburne University of Technology, Melbourne, Australia.
4
Department of Gastroenterology, Monash Medical Centre, Melbourne, Australia.
5
School of Clinical Sciences, Monash University, Melbourne, Australia.
6
Department of Gastroenterology, Sunshine Coast University Hospital, Birtinya, Australia.
7
Department of Gastroenterology, St Vincent Hospital, Melbourne, Australia.
8
Department of Gastroenterology, Canberra Hospital, Canberra, Australia.
9
Faculty of Science, Health and Engineering, University of Sunshine Coast, Sippy Downs, Australia.
10
IBD Service, Department of Gastroenterology and Hepatology, Royal Adelaide Hospital, Adelaide, Australia.

Abstract

BACKGROUND:

Quality of care in IBD has received much attention internationally, however, the available surveys focus on health professionals rather than patients.

AIMS:

The study aimed to assess the experiences of health care for people living with inflammatory bowel disease (IBD) against established Australian IBD Standards.

METHODS:

An online cross-sectional survey was conducted with Australians >/= 16 years old recruited via Crohn's & Colitis Australia membership, public and private clinics and the Royal Flying Doctor Service. Participants completed a questionnaire incorporating items addressing the Australian IBD Standards 2016, the Picker Patient Experience Questionnaire, IBD Control Survey, and the Manitoba Index.

RESULTS:

Complete data was provided by 731 respondents (71.5% female, median age 46 years, ranging from 16 to 84 years). While the majority (74.8%) were satisfied with their IBD healthcare, the care reported did not meet the Australian IBD Standards. Overall, 32.4% had access to IBD nurses, 30.9% to a dietitian, and 12% to a psychologist in their treating team. Participants managed by public IBD clinics were most likely to have access to an IBD nurse (83.7%), helpline (80.7%), and research trials (37%). A third of respondents reported waiting >14 days to see a specialist when their IBD flared. Participants received enough information; mostly from medical specialists (88.8%) and IBD nurses (79.4%). However, 51% wanted to be more involved in their healthcare.

CONCLUSIONS:

These data show discordance between expectations of patients and national standards with current levels of service provision which fail to deliver equitable and comprehensive IBD care. This article is protected by copyright. All rights reserved.

KEYWORDS:

IBD standards; inflammatory bowel disease; multidisciplinary care; quality of care; survey

PMID:
31707751
DOI:
10.1111/imj.14683

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