Healthcare Needs and Perceptions of People Living With Inflammatory Bowel Disease in Australia: A Mixed-Methods Study

Sharmila S Prasad; Marjorie M Walker; Nicholas J Talley; Simon Keely; Therése Kairuz; Michael P Jones; Kerith Duncanson

doi:10.1093/crocol/otab084

Healthcare Needs and Perceptions of People Living With Inflammatory Bowel Disease in Australia: A Mixed-Methods Study

Crohns Colitis 360. 2022 Jan 3;4(1):otab084. doi: 10.1093/crocol/otab084. eCollection 2022 Jan.

Authors

Sharmila S Prasad^{1

2}, Marjorie M Walker^{2

3}, Nicholas J Talley^{2

3}, Simon Keely^{1

2}, Therése Kairuz¹, Michael P Jones⁴, Kerith Duncanson^{2

5}

Affiliations

¹ School of Biomedical Sciences and Pharmacy, College of Health, Medicine and Wellbeing, University of Newcastle, Callaghan, New South Wales, Australia.
² NHMRC Centre of Research Excellence in Digestive Health, University of Newcastle, New Lambton Heights, New South Wales, Australia.
³ School of Medicine and Public Health, College of Health, Medicine and Wellbeing, University of Newcastle, New Lambton Heights, New South Wales, Australia.
⁴ School of Psychological Sciences, Macquarie University, Macquarie Park, Sydney, New South Wales, Australia.
⁵ School of Health Sciences, College of Health, Medicine and Wellbeing, University of Newcastle, New Lambton Heights, New South Wales, Australia.

Abstract

Background: Crohn's disease (CD), ulcerative colitis (UC), and indeterminate colitis are inflammatory bowel diseases (IBDs) that adversely affect the healthcare needs and quality of life (QoL) of people with IBD. The aim of this study was to explore the needs and perceptions of people with IBD in a primary care setting.

Methods: This sequential explanatory mixed-methods study consisted of a cross-sectional survey (included validated tools), followed by semistructured interviews on participants' perceptions: IBD management, healthcare professionals, IBD care, flare management, and pharmacist's IBD roles.

Results: Sixty-seven participants completed the survey, and 8 completed interviews. Quantitative findings: Age at diagnosis had significant association with medication nonadherence (P = .04), QoL (P = .04), and disease control (P = .01) among the respondents. The odds of medication nonadherence were 8 times (adjusted odds ratio [AOR] = 8.04, 95% confidence interval [CI] = 1.08, 60.10) higher among younger participants aged <30 years. Those diagnosed with CD (P = .02) reported more likely to have unfavorable perceptions of pharmacists' role in managing their IBD (AOR = 9.45, 95% CI = 1.57, 56.62) than those with UC and indeterminate colitis. Qualitative findings: General practitioners were considered the most important care provider and the first point of contact for patients in managing all aspects of IBD. Participants identified their key need to be timely access to specialized IBD care and found that other primary healthcare professionals lacked disease-specific knowledge for managing IBD.

Conclusions: Primary healthcare professionals are well positioned but need targeted training to influence the needs of IBD patients. The specialty role of an IBD educator could complement existing services to deliver and address patient-specific care.

Keywords: healthcare professionals; inflammatory bowel disease (IBD); patient perception.