Lalani Shehzeen, Mathias Holly, Heisler Courtney, Rohatinsky Noelle, Mirza Raza M, Kits Olga, Zelinsky Sandra, Nguyen Geoffrey, Lakatos Peter L, Fowler Sharyle, Rioux Kevin, Jones Jennifer L
Internal Medicine Resident, Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada.
PhD candidate, School of Public Health, University of Alberta, Edmonton, AB, Canada.
J Health Serv Res Policy. 2025 Jan;30(1):12-20. doi: 10.1177/13558196241276979. Epub 2024 Sep 2.
Canada has one of the highest age-adjusted incidence and prevalence rates of inflammatory bowel disease (IBD). Large patient volumes and limited resources have created challenges concerning the quality of IBD care, but little is known about patients' experiences. This paper aimed to better understand patient-perceived barriers to IBD care.
An exploratory qualitative approach was used for this study. Fourteen focus groups (with 63 total participants) were co-facilitated by a researcher and patient research partner across eight Canadian provinces in 2018. Patients diagnosed with IBD (>18 years of age) and their caregivers were purposefully recruited through Crohn's and Colitis Canada, gastroenterology clinics and communities, and national social media campaigns. Focus group sessions were recorded, transcribed, and analyzed using thematic analysis.
Most participants self-identified as being white and women. The analysis generated four key themes regarding patient-perceived barriers and gaps in access to IBD care: (1) gatekeepers and their lack of IBD knowledge, (2) expenses and time, (3) lack of holistic care, and (4) care that is not patient-centered. An additional four themes were generated on the topic of patient-perceived areas of health system improvement for IBD care: (1) direct access to care, (2) good care providers, (3) electronic records and passports, and (4) multidisciplinary care or an 'IBD dream team'.
This research contributes to the limited global knowledge on patients' experiences accessing IBD care. It is valuable for the development of care plans and policies to target gaps in care. Patients have identified system-level barriers and ideas for improvement, which should be taken into consideration when implementing system redesign and policy change.
加拿大是炎症性肠病（IBD）年龄调整发病率和患病率最高的国家之一。大量的患者以及有限的资源给IBD护理质量带来了挑战，但对于患者的经历却知之甚少。本文旨在更好地了解患者所感知到的IBD护理障碍。
本研究采用探索性定性研究方法。2018年，一名研究人员和患者研究伙伴在加拿大的八个省份共同主持了14个焦点小组（共有63名参与者）。通过加拿大克罗恩病和结肠炎协会、胃肠病学诊所和社区以及全国社交媒体活动，有目的地招募了被诊断患有IBD（年龄>18岁）的患者及其护理人员。焦点小组会议进行了录音、转录，并采用主题分析法进行分析。
大多数参与者自我认定为白人女性。分析得出了关于患者所感知到的IBD护理障碍和获取护理方面差距的四个关键主题：（1）把关人及其对IBD知识的缺乏，（2）费用和时间，（3）缺乏整体护理，（4）非以患者为中心的护理。关于患者所感知到的IBD护理卫生系统改进领域，还得出了另外四个主题：（1）直接获得护理，（2）优秀的护理提供者，（3）电子记录和通行证，（4）多学科护理或“IBD梦之队”。
本研究为全球关于患者获取IBD护理经历的有限知识做出了贡献。对于制定针对护理差距的护理计划和政策具有重要价值。患者已经确定了系统层面的障碍和改进想法，在实施系统重新设计和政策变革时应予以考虑。
