Antonina Mikocka-Walus1, Wayne Massuger2, Simon R Knowles3, Gregory T Moore4,5, Stephanie Buckton6, William Connell7, Paul Pavli8, Leanne Raven2,9, Jane M Andrews10. 1. School of Psychology, Deakin University, Melbourne, Victoria, Australia. 2. Crohn's & Colitis Australia, Melbourne, Victoria, Australia. 3. School of Health Sciences, Swinburne University of Technology, Melbourne, Victoria, Australia. 4. Department of Gastroenterology, Monash Medical Centre, Melbourne, Victoria, Australia. 5. School of Clinical Sciences, Monash University, Melbourne, Victoria, Australia. 6. Department of Gastroenterology, Sunshine Coast University Hospital, Sunshine Coast, Queensland, Australia. 7. Department of Gastroenterology, St Vincents Hospital, Melbourne, Victoria, Australia. 8. Department of Gastroenterology, Canberra Hospital, Canberra, Australian Capital Territory, Australia. 9. Faculty of Science, Health and Engineering, University of Sunshine Coast, Sunshine Coast, Queensland, Australia. 10. IBD Service, Department of Gastroenterology and Hepatology, Royal Adelaide Hospital, Adelaide, South Australia, Australia.
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.
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.
Authors: Jessica A Fitzpatrick; Sarah L Melton; Chu Kion Yao; Peter R Gibson; Emma P Halmos Journal: Nat Rev Gastroenterol Hepatol Date: 2022-05-16 Impact factor: 73.082
Authors: Subhadra Evans; Lisa Olive; Madeleine Dober; Simon Knowles; Matthew Fuller-Tyszkiewicz; Eric O; Peter Gibson; Leanne Raven; Richard Gearry; Andrew McCombie; Leesa van Niekerk; Susan Chesterman; Daniel Romano; Antonina Mikocka-Walus Journal: BMJ Open Date: 2022-06-10 Impact factor: 3.006
Authors: Reinier Cornelis Anthonius van Linschoten; Nikki van Leeuwen; Daan Nieboer; Erwin Birnie; Menne Scherpenzeel; Karen Evelyne Verweij; Vincent de Jonge; Jan Antonius Hazelzet; C Janneke van der Woude; Rachel Louise West; Desirée van Noord Journal: BMJ Open Date: 2022-01-12 Impact factor: 2.692
Authors: Erica J Brenner; Millie D Long; Courtney M Mann; Li Lin; Wenli Chen; Camila Reyes; Kirsten M Bahnson; Bryce B Reeve; Michael D Kappelman Journal: Inflamm Bowel Dis Date: 2022-05-04 Impact factor: 7.290
Authors: Antonina Mikocka-Walus; Wayne Massuger; Simon R Knowles; Gregory T Moore; Stephanie Buckton; William Connell; Paul Pavli; Leanne Raven; Jane M Andrews Journal: JGH Open Date: 2019-08-02