Quality of care in inflammatory bowel disease: actual health service experiences fall short of the standards

Mikocka‐Walus, Antonina; Massuger, Wayne; Knowles, Simon R.; Moore, Gregory T.; Buckton, Stephanie; Connell, William; Pavli, Paul; Raven, Leanne; Andrews, Jane M.

doi:10.1111/imj.14683

Cited by 36Inflammatory Bowel DiseasePatient Satisfaction in HealthcareHealthcare Quality and Management

Quality of care in inflammatory bowel disease: actual health service experiences fall short of the standards

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Mikocka‐Walus, Antonina, Massuger, Wayne, Knowles, Simon R., Moore, Gregory T., Buckton, Stephanie, Connell, William, Pavli, Paul, Raven, Leanne +1 more·2020·Internal Medicine Journal

DOI 10.1111/imj.14683

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Abstract

Background: Quality of care in inflammatory bowel disease (IBD) has received much attention internationally; however, the available surveys focus on health professionals rather than patients. Aims: To assess the experiences of healthcare for people living with 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 were 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 dietician 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%). One 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.

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Perspectives of individuals in this study support ongoing advocacy for psychological treatment in IBD; participants felt validation by the provisionally registered psychologist was enough to positively impact their psychological distress.
“Ongoing advocacy for psychological treatment in IBD, oftentimes overlooked in favor of a biomedical approach, is further supported by the perspectives of individuals in this study, who felt simply having their experience validated by the provisionally registered psychologist was enough to positively impact their psychological distress (Davis et al., 2020; Mikocka-Walus et al., 2020; Tarar et al.,”
From Moving Towards Acceptance and Values: A Qualitative Study of ACTforIBD Compared to IBD Psychoeducation (2024) · cites this paper as Mikocka-Walus et al., 2020
The rationale for online blended delivery of psychological interventions is to bridge barriers to accessing psychological support such as unpredictable symptoms and lack of resources including appropriately trained staff.
“The rationale for online blended delivery of psychological interventions, such as those in the current study, is to bridge barriers to accessing psychological support such as unpredictable symptoms and lack of resources including appropriately trained staff (Dober et al., 2021; Forbes & Johnson, 2021; Mikocka-Walus et al., 2020).”
From Moving Towards Acceptance and Values: A Qualitative Study of ACTforIBD Compared to IBD Psychoeducation (2024) · cites this paper as Mikocka-Walus et al., 2020
In a recent Australia-wide study, close to 70% of those with severe psychological distress do not see a mental health practitioner.
“In our recent Australia-wide study, we have shown that psychological support for people with IBD is very poor, with close to 70% of those with severe psychological distress not seeing a mental health practitioner.43 44”
From Acceptance commitment therapy (ACT) for psychological distress associated with inflammatory bowel disease (IBD): protocol for a feasibility trial of the ACTforIBD programme (2022) · cites this paper as [43]
Very few patients with IBD actually receive psychological treatment.
“Unfortunately, very few patients actually receive psychological treatment.”
From Acceptance commitment therapy (ACT) for psychological distress associated with inflammatory bowel disease (IBD): protocol for a feasibility trial of the ACTforIBD programme (2022) · cites this paper as [43]

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Wakeman, R. H., Ainley, R., Arnott, I. D., Barrett, K. J., Bell, G., Berry, S., Bhatnagar, G., Blackwell, J., Bloom, S. L., Bramwell, C., et al. (2021) · Journal of Crohn s and Colitis · doi:10.1093/ecco-jcc/jjab076.256 · Cited by 1 · see citing works
Technical Quality of Delivered Care for Patients with Inflammatory Bowel Disease in Tabriz Care Centers
Tabrizi, J. S., Somi, M. H., Alidoost, S., Asghari, S., Jafarabadi, M. A., & Gharibi, F. (2012) · DOAJ (DOAJ: Directory of Open Access Journals)
Patients’ perceptions as an indicator of quality of care, in Greek patients with inflammatory bowel disease
Pallis, A. G., Κωσταγιόλας, Π., Mouzas, I., & Niakas, D. A. (2008) · Scandinavian Journal of Caring Sciences · doi:10.1111/j.1471-6712.2007.00594.x · Cited by 13 · see citing works

Authors: Mikocka‐Walus, A., Massuger, W., Knowles, S. R., Moore, G. T., Buckton, S., Connell, W., Pavli, P., Raven, L., & Andrews, J. M.
Affiliations: Deakin University (AU)
Crohn's & Colitis Australia (AU)
Swinburne University of Technology (AU)
Monash Medical Centre (AU)
Sunshine Coast University Hospital (AU)
St Vincent's Hospital Melbourne (AU)
Canberra Hospital (AU)
University of the Sunshine Coast (AU)
Royal Adelaide Hospital (AU)
Corresponding author: Mikocka‐Walus, Antonina
ORCID: Mikocka‐Walus, Antonina
Massuger, Wayne
Knowles, Simon R.
Moore, Gregory T.
Connell, William
Pavli, Paul
Raven, Leanne
Andrews, Jane M.
Venue: Internal Medicine Journal
Publisher: Wiley
Published: 2020-10
Volume: 50
Issue: 10
Pages: 1216-1225
ISSN: 1444-0903 (ISSN-L)
1445-5994
DOI: 10.1111/imj.14683
OpenAlex: W2986561643
Cited by: 36
References: 32
Citations by year: 2026: 2 · 2025: 4 · 2024: 8 · 2023: 8 · 2022: 8 · 2021: 4 · 2020: 1 · 2019: 1
FWCI: 2.11
Type: journal article
Language: en
Open access: green
figshare.com
Licence: cc-by
onlinelibrary.wiley.com/termsAndConditions#vor (vor, 26 d)
Locations: Internal Medicine Journal (publishedVersion)
PubMed (publishedVersion)
Deakin Research Online (Deakin University) (submittedVersion)
Figshare (submittedVersion, cc-by)
Minerva Access (University of Melbourne) (submittedVersion)
Swinburne figshare (Swinburne University of Technology) (submittedVersion)
Funders: Ferring (unrestricted educational grant to Crohn's & Coliti)
Topics: Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Inflammatory Bowel Disease
Health Sciences › Health Professions › General Health Professions › Patient Satisfaction in Healthcare
Health Sciences › Health Professions › Health Information Management › Healthcare Quality and Management
Keywords: inflammatory bowel disease, quality of care, patient experience, specialist waiting times, patient involvement in care, health care access, Crohn's disease, ulcerative colitis, patient satisfaction
MeSH terms: Adolescent, Australia, Colitis, Cross-Sectional Studies, Female, Health Services, Humans, Male, Middle Aged, Reference Standards, Inflammatory Bowel Diseases

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Quality of care in inflammatory bowel disease: actual health service experiences fall short of the standards

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