Improving access to inflammatory bowel disease care in Canada: The patient experience.

IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES
Shehzeen Lalani, Holly Mathias, Courtney Heisler, Noelle Rohatinsky, Raza M Mirza, Olga Kits, Sandra Zelinsky, Geoffrey Nguyen, Peter L Lakatos, Sharyle Fowler, Kevin Rioux, Jennifer L Jones
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Abstract

Objectives: 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.

Methods: 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.

Results: 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'.

Conclusions: 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.

改善加拿大炎症性肠病护理的可及性:患者体验。
目标:加拿大是炎症性肠病(IBD)年龄调整后发病率和流行率最高的国家之一。庞大的患者数量和有限的资源给 IBD 治疗质量带来了挑战,但人们对患者的经历却知之甚少。本文旨在更好地了解患者在接受 IBD 治疗时遇到的障碍:本研究采用了探索性定性方法。2018年,研究人员和患者研究伙伴在加拿大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、肠胃病诊所和社区以及全国性社交媒体活动,有目的地招募了确诊为 IBD 的患者(年龄大于 18 岁)及其护理人员。对焦点小组会议进行了记录、转录,并采用主题分析法进行了分析:大多数参与者自我认同为白人和女性。分析得出了患者认为在获得 IBD 护理方面存在障碍和差距的四个关键主题:(1)看门人及其缺乏 IBD 知识;(2)费用和时间;(3)缺乏整体护理;以及(4)护理不是以患者为中心。就患者认为医疗系统需要改进的 IBD 护理领域这一主题,还提出了另外四个主题:(1) 直接获得护理,(2) 优秀的护理提供者,(3) 电子记录和护照,以及 (4) 多学科护理或 "IBD 梦之队":这项研究为全球范围内有关患者获得 IBD 护理经验的有限知识做出了贡献。这项研究对制定护理计划和政策以弥补护理方面的不足很有价值。患者指出了系统层面的障碍和改进意见,在实施系统重新设计和政策变革时应将其考虑在内。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
4.40
自引率
4.20%
发文量
39
期刊介绍: Journal of Health Services Research & Policy provides a unique opportunity to explore the ideas, policies and decisions shaping health services throughout the world. Edited and peer-reviewed by experts in the field and with a high academic standard and multidisciplinary approach, readers will gain a greater understanding of the current issues in healthcare policy and research. The journal"s strong international editorial advisory board also ensures that readers obtain a truly global and insightful perspective.
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