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

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.

Keywords

inflammatory bowel disease access to care patient-oriented research

Introduction

Inflammatory bowel disease (IBD), mainly classified as ulcerative colitis (UC) and Crohn’s disease (CD), is characterized by chronic relapsing inflammation of the gastrointestinal tract.^1–3 It occurs in genetically susceptible individuals exposed to environmental risk factors.¹ Its etiology is thought to involve a complex interaction between the immune response, microbial reactions, environment, and genetics of the individual.^2,3

IBD affects both adults and children, with up to 25% of the patient population being under the age of 20.³ The global incidence rate of IBD has been rising globally over the last few decades, with geographical variation.^2,4 Canada has been documented as having one of the highest IBD incidence rates worldwide.^1,5–7 It is estimated that 19.2 Canadians per 100,000 and 20.2 Canadians per 100,000 live with UC and CD respectively.¹ It is predicted that the prevalence of IBD in Canada will continue to rise.⁶

Patients with IBD experience multisystem involvement which has a significant impact on patients’ mental health, productivity, and overall quality of life.⁸ The unpredictable nature of the disease means it does not coincide with scheduled appointments, making it difficult to diagnose and for patients to receive appropriate follow-up care. Often, there is a need for a multidisciplinary care approach to address all related health issues.⁸ The chronic nature of IBD requires a lifetime of interactions with the health system leading to significant stressors for both patients and health care systems.^6,7

Timely access to appropriate IBD care is crucial for patients’ well-being. Yet, the limited existing body of research suggests that IBD patients may encounter some barriers to care, including long wait times for specialty IBD care, limited availability of specialty IBD care or local health services, lack of access to collaborative multidisciplinary care, and challenges with patient referrals.^9–13 Wait times can also be high for other allied health services that support patient wellbeing, including psychologists. The Canadian Institute for Health Information estimates the median wait time for community mental health services to be 31 days,¹⁴ while a retrospective cohort study in Toronto, Ontario, determined a wait time for psychiatric services to be 133 days¹⁵ Further, most existing research on access to IBD care has focused on the perspectives of multiple stakeholders, including gastroenterologists and other stakeholders, while few studies have focused on the experiences of patients.^9,10 Given the gap in knowledge of IBD patients’ experience accessing care, we sought to better understand patient-identified barriers to IBD care within the health care systems. Specifically, we aimed to:

(1) Gain a comprehensive understanding of patient-identified barriers to IBD care, and

(2) Identify patients’ suggestions for possible health system solutions to improve IBD care.

Additional data from this study on the impact of barriers to care on patients’ physical and emotional wellbeing have been published.¹²

Methods

Design

This exploratory qualitative descriptive research study used focus groups to capture patients’ experiences and is reported using COREQ criteria. An exploratory approach was selected, as relatively little is known in the existing medical literature about patient-perceived barriers to IBD care and patient-derived solutions for systems improvement.

Setting, sample and recruitment

Purposive sampling was used to recruit participants between the period of September 2018 and January 2019. This is a sampling technique used widely in qualitative studies, selecting participants knowledgeable in the topic being investigated to select information-rich cases with the effective use of limited resources.¹⁶ Adults (18 years or older) living in Canada with an IBD diagnosis were eligible to participate in the study. Recruitment was led through collaboration with Crohn’s and Colitis Canada (a national charity that supports research into IBD and supports those affected by the disease), gastroenterology clinics, communities, and national social media campaigns. Logistical and financial support for travel was provided to patients to support their participation. Caregivers were also encouraged to attend with patient participants during data collection, as they were often key supports during clinical appointments. Caregivers also supported the participation of patients who had been diagnosed as pediatric patients and lacked complete autonomy in their health care decisions before transitioning to the adult health care system.

Data collection

Fourteen in-person focus groups were organized across eight Canadian provinces (Alberta, British Columbia, Manitoba, New Brunswick, Nova Scotia, Ontario, Quebec and Saskatchewan) to allow patients to share their in-depth thoughts and experiences accessing IBD care. Patient research partners, physicians, and academic researchers co-designed all research materials, including study design and focus group guides. An iterative process guided by existing literature on IBD was used for the development of the focus group script and focus group questions were guided by the Levesque patient-oriented access framework.¹⁷

A woman-identifying researcher and patient research partner co-facilitated the focus group sessions, with five to seven participants attending each session. All participants only attended one focus group. Each focus group was 60–90 min in duration. The focus group facilitators had previous training and experience conducting research with patient engagement. Participants were made aware of the facilitators’ professional and personal experiences of IBD. Participants were able to attend more than one focus group. These focus groups were held in both urban and rural regions of most provinces to ensure geographic representation. All sessions were audio-recorded for transcription purposes.

Data analysis

The audio recordings of the focus groups were transcribed verbatim, de-identified, and checked for accuracy. The de-identified transcripts were analyzed inductively using thematic analysis,¹⁸ using Quirkos software. First, transcripts were read and re-read to develop a coding framework with identified code categories and themes. Transcripts were coded by two researchers. Codes were collapsed into categories and categories were then organized into different themes. The themes and supporting data were reviewed and discussed by the research team to finalize theme names and definitions. Any disagreements or conflicts were resolved through discussion and consensus.

Results

Sixty-three participants, comprising 60 patients and three caregivers, took part in the focus groups. There were no refusals to participate or withdrawn participants. The mean age of participants was 49 years (range of 23–77 years). As noted in Table 1, most participants self-identified as white and women (additional sociodemographic information is presented in the table). Four key themes and additional sub-themes regarding patient-perceived barriers to IBD care were identified: (1) gatekeepers and lack of IBD knowledge, (2) expenses and time, (3) lack of holistic care, and (4) care that is not patient-centered. A further four key themes regarding patient-perceived areas of health system change to improve access to IBD care were identified: (1) direct access to care, (2) good care providers, (3) electronic records and passports, and (4) multidisciplinary care or an ‘IBD dream team’.

Table 1.

Participants’ self-reported sociodemographic information (N = 63).

Demographics	n	%
Province
Alberta	1	1.6
British Columbia	24	38.1
Manitoba	4	6.3
New Brunswick	4	6.3
Nova Scotia	4	6.3
Ontario	15	23.8
Quebec	6	9.5
Saskatchewan	5	7.9
Stakeholder group
Patients	60	95.2
Caregivers	3	4.8
Gender
Men	22	34.9
Women	39	61.9
Undisclosed	2	3.2
Ethnicity
White	53	84.1
Indigenous	3	4.8
Middle eastern	1	1.6
Undisclosed	6	9.5
Location
Urban	33	52.4
Rural	30	47.6

Patient-perceived barriers to care

Gatekeepers and lack of IBD knowledge

Participants described ‘gatekeepers’ who obstructed their access to care. For example, general practitioners (GPs) were viewed as gatekeepers to specialists, emergency department personnel as gatekeepers to urgent care, and receptionists as gatekeepers to health care providers in the outpatient clinic setting. Many participants perceived gatekeepers as lacking knowledge related to IBD diagnosis and management and inferred some gatekeepers may not be making appropriate decisions when pursuing access to IBD care.

Several participants perceived their GP as lacking IBD knowledge. This included symptom recognition, pathophysiology, disease course, treatment options, and impact on quality of life. GPs are often the access point to specialized health care services, so this lack of knowledge was perceived as delaying referral and access to specialist:

I think that it’s the frustration with the lack of knowledge from the doctors in this town. We had a pediatrician who told him have Tylenol 3 and eat more fiber and you’ll feel better, while he was in a flare [a period when symptoms are more severe]. He was admitted into the hospital, and she wouldn’t send us to Vancouver Children’s.

Other examples shared by participants included instances when referral to specialty IBD care was delayed for several years and participants were asked to try trial medications and lifestyle modifications, including laxatives and fibers. In one case, this delay led to an IBD complication (bowel rupture), leaving the participant angry and frustrated:

That’s how I felt as a mother, watching her for years going to the doctor and the doctor saying, ‘Take Metamucil and you’ll be fine’ and it actually made it worse. This went on - Restoralax, numerous things. If it wasn’t for that GP, [my daughter] might have gotten to a specialist sooner and maybe prevented her from having her bowel burst.

Experiences with frontline health care workers, specifically GPs, varied among participants. Three of the participants said they felt their GP’s ‘ego’ was interfering with access to specialty IBD care. Many GPs were perceived as acting as if they could treat any health issue and not acknowledging their lack of IBD knowledge, which delayed referral.

Emergency departments are often considered a last resort for patients. Some participants perceived emergency physicians and personnel including triage staff, and paramedics as lacking appropriate IBD knowledge:

You’re coming through Emergency. Most of the time, emergency doctors don’t have, you know, familiarity with what your symptoms are, they don’t really connect, or they’re not familiar with IBD.

One participant suffered a bowel rupture, which was not recognized by Emergency Department staff as an acute case due to its painless presentation. This lack of knowledge resulted in delayed care and management for this individual:

In the meantime, my colon ruptures at home. I call the ambulance. The ambulance gets me there but by that point I'm no longer in pain because the rupture part is done ... They are not believing me because I look just fine. I’m no longer in pain. They’re thinking. ‘Oh, you’re just fine.’ ... It wasn’t until the day later that they got me into surgery that, as soon as he cut me open, all the liquids came out. He says, ‘You did have a rupture.’

A few participants also described experiences with gastrointestinal (GI) specialists with limited knowledge on IBD.

Time and expenses

Many participants perceived time and expenses as being barriers to accessing care.

Transportation was a barrier for participants living in rural areas, those without a vehicle, and those with mobility issues. Transportation and travel were perceived as being costly. For some participants being able to access specialty care was worth the cost. Some participants did not perceive value in traveling for care but continued to do so to stay in the system of care. In some provinces, tests and resources were only accessible in a single hospital, which could be a far distance from communities where patients lived. One patient reported they traveled up to 3 hours each way for appointments. These appointments would often be for trial treatments or medications that did not always yield results:

Three hours to get there and three hours back, and I’ve been five times this year. ... You go to an appointment just to have a quick talk and they book an appointment, and you have to go back for results and then the medicine doesn’t work.

One participant had tracked the kilometers she had commuted from her community to an urban center for her husband’s care and reported traveling over 222,000 km over the course of several years.

Some participants perceived the cost of medications and therapy as being a barrier. One patient described receiving a monthly bill of C$982 for IBD-related medications. In addition to medication costs, there can be costs for complementary allied health therapies and mental health care, which are typically not covered under public health insurance in Canada:

Biggest barrier for me was the cost of my medications. I got to the pharmacy after my initial diagnosis. I was released from the hospital, I go to the pharmacy, get my medication, get my bill: $982 ... for one month. I was like ‘Are you going to, like, are you trying to kill me? Give me a heart attack or something?’

Medication costs are often not covered by insurance, and while some patients deemed themselves lucky to have prescription drug coverage through their employer, not all participants had extended coverage. Participants acknowledged the value of having insurance policies for drug coverage, given the cost of their many medications. However, they described the insurance system as ‘convoluted and worrisome,’ often with loss of coverage from errors. Patients indicated that they often navigated these insurance systems by themselves and viewed it as a complicated process:

Same thing with Humira. I had to go through the whole gamut of trying to get my insurance to cover it, you know, get the exceptional drug status and everything through the province, and going through that I had to do most of that myself.

Lack of holistic care

Given that IBD is a multisystem disease that affects all aspects of a patient’s life, holistic approaches to care are important. However, many participants perceived a lack of available holistic care as a key barrier and gap in IBD care.

Both patients and caregivers perceived a gap in mental health support. Participants raised concerns about their mental health management to their family doctors during their IBD consultations. However, their concerns were often dismissed, and they were not referred for appropriate care:

I’ve talked to the GP and the GP’s like, ‘Let’s get all this other stuff figured out rather than add another doctor.’ But the mental part of it to me is such a big layer.

I was just saying that you’ve also said you’ve experienced depression and anxiety, as most people do apparently from Crohn’s. And there’s another little quirk that happens if you’re diagnosed young. So, you get stalled emotionally, and we cried out for help and they [did] nothing, absolutely nothing.

Patient participants also perceived inadequate support and disease education. Participants felt uninformed by health care professionals and physicians about their diagnosis, prognosis, treatment, and management plan. They also felt uninformed about possible complications, lifestyle changes or modifications they would need to make and had to self-learn management strategies. Participants stated they often sought out information to educate themselves to address these gaps. Participants also perceived a need to self-advocate to receive adequate support, such as dietician and psychologist involvement in care, as the options were never explained or offered:

They don’t talk to you about the down and dirty stuff. They don’t tell you about running to the bathroom 50 times, or having blood, or what you should do. It’s like they don’t know about those things.

One thing I would like is the diagnosis, better teaching. Like, what it is, how to treat it, how to go about it ... I feel like I was left to myself and, you know, figuring out, and asking tons of questions, if I had the nerve ... I wish they just laid it out there for you.

Care is not patient-centered

Some participants perceived their GP as not often considering the patient perspective and priorities when it came to offering treatment, and sometimes having differing values and priorities. One participant reported an experience where their provider was insisting on starting a medication they had expressed concerns about. However, the physician continued insisting and told the patient ‘Come back next time and you still don’t want to go on [the medication] then don’t come back to me anymore. I don’t want to see you.’

Participants perceived minimal consideration for their day-to-day schedule and commitments when it came to scheduling appointments. They were often provided with appointments that required taking time off school or work and were unable to request other times. Participants also perceived appointments as being short in duration and not allotting for time to accommodate patients’ questions and concerns:

You’re in a quick little half an hour appointment. And there’s so many things to cover and medicines, that I don’t get a lot of questions answered. You walk out of there wondering, ‘Hmmm, what does 95% Crohn’s mean?’

Some participants included adult patients who had been diagnosed at a young age. They reported that the transition from pediatric to adult care is often challenging. It involves several sudden changes including a new provider, and the attendance of appointments alone after previously being accompanied by their parents. One participant related being redirected from the pediatric Emergency Department (referred to as an ‘Emerg’) to the adult Emergency Department when they experienced a flare at age 15:

We went to children’s Emerg, which was routine through all the years. That’s what we did. And they said, ‘You can’t actually come here anymore because now you’re considered an adult, so now you can drive around the building and go to adult Emerg. And it was almost immediately me having to fight the doctor to have my parents involved in the conversation.

Several participants perceived the system of care as one that is easy to get mismanaged or lost in. With IBD being a chronic disease affecting multiple systems, patients often work with multiple care providers, who lack a system of effectively communicating with each other, creating a gap within their chain of care. There was collective agreement between participants that health system improvements are needed to improve continuity of care. They offered examples such as electronic health records, collaborative multidisciplinary clinics, case managers for follow-up, and clear access points for re-entry.

Patient-perceived areas for health systems improvement

Direct access is strongly desired and greatly appreciated

One key suggestion for health systems improvement was direct access to care, including the ability to receive care without booking appointments, needing a referral, and/or waiting for diagnostic testing. Some participants perceived the option to call and access immediate care during a flare to be incredibly important. Some participants already had access to immediate care, by using on-call IBD nurse practitioners or navigators (health professionals who connect a patient to a larger care team). As one participant said of their navigator:

One of the first questions I asked [was:] … ‘When I am really having a bad flare up (and I think you have to ask that question), what do I do?’ And her response was very good. She said, ‘You phone my office right away and we’ll deal with it.’

Another participant added about the benefit of having a nurse:

[My family member] had a GI nurse that you could talk to at any time. And, like, she was just freaking knowledgeable … If I needed anything, I could get it right away. I never felt worried about access.

Good care providers are key

Many participants perceived quality accessible care as being linked to care providers, both GPs and specialists, and their rapport with patients. Patients highly valued the time offered by practitioners to offer good care, to follow up, and to ensure they were up to date with patient information from their multidisciplinary care: As one participant said of their GP:

Any blood test that I was getting, they all went to her as well. They were checked over. And I know a couple of times, when things weren’t going well - one of the blood results was poor, she actually called me.

Participants who perceived their providers positively indicated that their providers were often able to provide quick care and attention. Patients valued providers’ efficiency in addressing their situation and concerns, which can often change suddenly. Participants from one site had access to an IBD nurse specialist, which was perceived as positive because the nurse was able to spend more time with the patient, and was a good connection between doctors and patients:

I really felt comfortable and understood and well taken care of. To get a colonoscopy used to take me a year. I was sick as Hell and it took a year before I could get one. And here it takes maybe a month or two.

Many participants perceived providers with a good understanding of IBD as a key component to health systems improvement. As one caregiver said:

The main thing that we noticed was that, once we got hooked with a good GI in [our city], everything seemed to change, like, for the positive. Things started happening. It was just like, all of that time we spent trying to get a diagnosis and just trying to get proper treatment for her, just kind of mellowed and then we kind of knew where we were going, what we were doing … It just took a lot of the stress away.

Participants appreciated providers with a willingness to refer to specialists and departments for care. They spoke of being provided referrals for psychological support and care, which was perceived as being extremely beneficial for patient health and the patient experience. There was agreement between the participants on the importance of referrals for additional support for their IBD. Patients who lacked this support had a contrasting experience in the care they received.

I had a horribly incompetent family physician, who would’ve rather cut his arm off with a chainsaw than refer me to a specialist. And he never did. And I am still angry at him, 46 years later, for the harm and suffering he caused me, by not referring me to a competent doctor related to IBD.

Electronic records and passports

Participants reflected on having to explain their health care condition, timeline and progression repeatedly to various health care professionals on different occasions. They described this as being ‘cumbersome and even degrading’. Others reflected on how they would often forget certain details, which may have been important to their care. Several discussions were raised on the importance of an electronic health system, which would allow for documentation and patient records that would be accessible and shared amongst providers. This would facilitate communication between providers, without the patient having to be the sole source of information. An additional benefit would be patients’ ownership of their own health data, which they viewed as valuable for self-advocacy. Participants also suggested having a health passport that would allow easy access to emergency care when experiencing acute situations, flares and pain. One participant provided an example of such continuity of care:

One of the positive things I’ve seen is all the information is on one system. So, every single doctor has access to blood results, all that kind of thing, and you can actually log in yourself and access that as well … It took a long time to figure all of that out. It took about a year and a half to get it all coordinated and understand this is the easiest way to do it and get everything done in one place, because then everyone has access to the same thing.

IBD dream team

Participants stressed the importance of a team-based or multidisciplinary care approach to IBD. Participants mentioned that, ideally, they would have access to several multidisciplinary team members for their care. These members included gastroenterologists, dieticians, case managers/coordinators, pharmacists, mental health professionals, GPs, 24/7 IBD nurses or nurse practitioners, and other relevant specialists and allied health care providers, along with peer support and patient-family advocates:

Crohn’s is not just a GI disease. It’s head-to-toe, from skin problems to joint problems to eye problems. So, there has to be a mechanism in place that recognizes that, that can steer towards the appropriate source for help.

Discussion

Our research highlights the voices of IBD patients and some caregivers from across Canada, by reporting patient-perceived barriers to IBD care and suggestions for system improvement. Health care providers’ lack of IBD knowledge, along with time and costs, lack of holistic care, and lack of patient-centered IBD care were perceived by participants as being key barriers to care. Participants gave several suggestions on health system improvements, including the provision of low-barrier direct access, good care providers, the implementation of electronic health records and health passports, and the availability of multidisciplinary care teams.

Our findings contribute to the small but growing body of knowledge on patient-centered IBD care, confirming the existence of certain barriers previously reported in the literature. For instance, a qualitative study on challenges for IBD patients in Ontario, Canada identified low quality of care, misdiagnosis, and delayed care through gatekeeping as key challenges.¹⁹ Financial barriers, including cost of medication, difficulties navigating insurance and the cost burden of missing time from work, have also been previously identified.^19,20 There is also a growing portfolio of research outlining the importance of psychosocial care for IBD patients to address the complex and all-consuming nature of the disease.^19,21 A study conducted in Egypt on the psychological impact of IBD documented that 56.2% of participants had major depressive disorder alone, while 37.1% had both depression and anxiety.²²

Participants in this research also spoke of GPs’ often poor IBD knowledge. As GPs are the primary access point to specialist level care, inadequate knowledge and awareness of IBD may result in delayed or missed diagnosis. Our findings support existing research that has documented discrepancies between IBD patient priority setting and what health care providers perceive as being priorities, including differing views on treatment goals and symptom management.^23–25 Concerns about delayed diagnosis are also well warranted. A recent systematic review identified a median diagnostic delay of 2 months for CD and 5.3 months for UC.²⁶ Similarly, a retrospective study in South Korea found a media diagnostic time of 6.2 months for CD and 2.4 months for UC.²⁷ These delays were associated with increased intestinal surgery risks. This history of conflicting patient and provider priorities and outcomes of delayed diagnoses emphasizes the importance of investigating patient-perceived barriers to care to support positive patient outcomes.

Some of our findings have been previously reported as barriers to care, but from other stakeholder perspectives. For example, research has identified challenges associated with the transition from pediatric to adult care.²⁸ Deficiencies in critical phases of transitional care can result in interruption of treatment, increased rates of complications, and lack of compliance with treatments.²⁸ Another study showed concern amongst both adult and pediatric gastroenterologists regarding training for adolescent medicine and transition care at 65% and 62% respectively.²⁹ Further, a survey study in Nova Scotia, Canada focused on GP-perceived barriers to IBD care and identified the referral system and wait times as being key barriers.⁹ Such commonalities increase the likelihood that system interventions may occur if they address barriers identified by multiple stakeholders.

This research also contributes new understandings of patient-centered IBD care and may have implications for clinical care. Even if a GP does have working knowledge of IBD, the perception of being underinformed may cause distress for patients and could contribute to worsening mental health outcomes. Additional IBD-specific training and education would ensure that all GPs have a baseline knowledge of IBD and could reassure anxious patients. Self-advocacy may be one avenue for patients and families to address their concerns. Advocacy skills for IBD patients can be shared and taught through a variety of media including social media and patient communities, which may be helpful resources for patients.^30,31

Although patient-centered care and research has become more prominent in Canada over the last decade, more attention needs to be shifted to system redesign that meets the needs of patients and allows them to feel better served. This was made evident in our research by patients who shared stories of medical appointments being booked without accounting for their schedules, which often had larger implications such as lost income from missed time from work, or even loss of employment.

Consideration should be given to the potential system improvements provided by participants, including the implementation of universal electronic medical records and rapid access clinics. These contribute to other interventions previously identified in the literature. For example, a 2019 paper indicated the importance of involving patients in IBD care improvement, through feedback, shared decision making and improved communication between patients and health care practitioners.³² The need for remote care, and communication facilitation through IBD nurses and direct access websites, was listed as an area for improving IBD care.³² Recent research has demonstrated that the role of IBD nurses in multi-disciplinary IBD teams is crucial and acts as a ‘filter’ between ‘doctor and patient’.³³ They perform important tasks from clinical assistance to therapeutic education and making direct contact with patients.³⁴ A UK-based study indicated that increased core funding is needed to systematically scale up the role of IBD nurses and this scaling could improve patient-perceived barriers and access to IBD care.³⁵ The inclusion of IBD nurses in IBD units has been identified as a priority in the European Crohns’ and Colitis Organization’s Quality of Care Standards.³⁶ Adapting some of the organization’s other recommendations, such as the inclusion of other allied health professionals in the IBD unit, may help to address other patient-perceived barriers, including lack of holistic care.

Limitations

There are two main limitations to this study. First, although we sampled widely to obtain a diverse participant pool, most participants self-identified as white and as women. Future patient-oriented IBD research could focus on patient populations typically underrepresented, such as patients identifying as Indigenous or gender diverse.

Second, the data was collected pre-COVID-19, so there may be some changes to how patients interact with the health care system today. Nevertheless, we believe that many of the reported barriers and solutions are still relevant as the health care system enters a post-pandemic recovery.

Conclusions

Patients face many obstacles when trying to access IBD care. Although some challenges exist at the micro level, such as provider knowledge of IBD, most barriers exist at the macro level. Macro-level barriers require system-level changes to improve access to care. Participants in our study identified system-level areas for improvement, suggesting that not only are patients aware of the entrenchment of access barriers and the need for wide-scale interventions, but they have identified improvements that would work for them. Listening to and acting on patient-identified ideas is critical for improved access to care and, ultimately, improved patient outcomes. Patient involvement in system redesign should be a requisite when developing, implementing, and evaluating system changes and models of care.

Footnotes

Acknowledgments

We would like to thank Crohn’s & Colitis Canada for assisting with recruitment and the PACE Network for co-investigator networking. We also extend a special thank you to our participants, collaborators, and contributors for moving this important work forward.

Declaration of conflicting interests

The authors declare that there are no conflicts of interest.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Canadian Institutes for Health Research and the Nova Scotia Health Research Fund.

Ethical statement

Before the recruitment and data collection process, institutional research ethics approval was obtained from Nova Scotia Health (file 1021896).

ORCID iD

Holly Mathias

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