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
{"title":"Improving access to inflammatory bowel disease care in Canada: The patient experience.","authors":"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","doi":"10.1177/13558196241276979","DOIUrl":null,"url":null,"abstract":"<p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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'.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":15953,"journal":{"name":"Journal of Health Services Research & Policy","volume":null,"pages":null},"PeriodicalIF":1.9000,"publicationDate":"2024-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Health Services Research & Policy","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1177/13558196241276979","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"HEALTH POLICY & SERVICES","Score":null,"Total":0}
引用次数: 0
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.
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.