Boston University School of Medicine Continuing Medical Education (BUSM CME) and the Crohn’s and Colitis Program at Boston Medical Center (BMC) are implementing a program to address disparities in health maintenance for patients with inflammatory bowel disease (IBD). This program focuses on systems-based interventions to improve the management of health maintenance and vaccination utilization among patients with IBD in a medically underserved patient population.

As the largest safety-net hospital in New England, BMC serves a significantly disproportionate number of disadvantaged patients. Approximately 59% of BMC patients are from underserved populations, such as the low-income and the elderly, who rely on government payors for their coverage. Approximately 32% of these patients do not speak English as a primary language.

Unwavering in our long-standing commitment to address the health needs of our community, BUSM/BMC aims to improve health outcomes among our underserved populations. For several years, BMC researchers have focused on vaccination rates in patients with IBD. Quality improvement (QI) studies have been initiated to increase vaccination rates among patients with IBD. However, our providers and staff continue to observe gaps in care as it relates to vaccinations and screenings for preventive health maintenance for our medically underserved patients. This gap has further been exacerbated by the COVID-19 pandemic, which has transitioned most patient visits to telehealth appointments, delaying vaccinations and necessary screenings. 

BUSM and BMC’s Crohn’s and Colitis Program partnered with Health Resources in Action (HRiA), a nonprofit public health consultancy organization that provides research, evaluation, training and capacity building services, to conduct focus groups with medically underserved patients with IBD and interviews with providers who care for them. The purpose of these focus groups and interviews was to explore perceptions related to preventative health maintenance among adult patients with IBD; to identify facilitators and barriers to managing their diagnoses; and to explore ways in which the barriers can be addressed moving forward. Findings from this process are intended to inform a 12-month QI initiative currently underway within BMC’s Crohn’s and Colitis Program with the ultimate goal of improving patient care.

Methods

Four focus groups were conducted virtually in English (n=3) and Spanish (=1) with IBD patients (n=11) receiving care at BMC’s Crohn’s and Colitis Program and who were categorized as medically underserved — defined as insured by MassHealth or the Boston Medical Center Accountable Care Organization (ACO) and with outstanding health maintenance needs (e.g., lacking a documented flu shot in the past two years). In addition, interviews were conducted with two clinical providers serving patients with IBD. Qualitative analyses were conducted with NVivo (NVivo qualitative data analysis Software; QSR International Pty Ltd. Version 12). Transcripts were double coded by two analysts based upon a mutually agreed upon codebook and differences were reconciled through discussion until a consensus was reached (average kappa=0.96). Key themes were identified by discussion frequency and intensity.

Key Themes and Conclusions

The overarching themes that emerged from these comprehensive discussions included the following:

• IBD is a painful chronic condition, characterized for many patients by a long journey of learning about their condition, identifying triggers of IBD flare ups and finding an effective individualized treatment plan.
• IBD patients and providers see medical management as a critical component of managing IBD and preventing flare ups. Yet, patients encountered numerous barriers to managing their IBD through medication and treatment. Recommendations for addressing these barriers include building multi-disciplinary IBD care, improving cultural sensitivity, and providing more information about IBD while ensuring that this information is available in the patient’s primary language.
• Living with IBD can be stressful, stigmatizing and isolating. Patients and providers recommended integrating mental health resources, including mental health services and support groups, into the IBD care system. 
• IBD patients often have to be proactive when learning about triggers of IBD and holistic approaches to managing their IBD. In some cases, IBD patients find support and information from online spaces and allied healthcare providers such as nutritionists. Patients recommended integrating holistic approaches to IBD care and management, including diet/nutrition, exercise and managing stress. Another recommendation was improving access to information about IBD and IBD management in accessible ways and in patients’ primary languages.
• When seeking care for IBD pain in emergency department settings, patients described emergency department providers as having limited knowledge of IBD and IBD pain management. Patients also described experiencing stigma when seeking pain medication to help managing painful flare-ups. One recommendation was to ensure access to IBD providers during an IBD flare-up.
• Neither patients nor providers detailed the linkages between the importance of maintaining vaccine schedules, IBD and IBD management. Patients recommended providing information about why vaccines are important for managing IBD and providing factual information about vaccines in general in an effort to address concern about vaccine reactions and vaccine misinformation. Providers discussed the value of training regarding discussing vaccines with patients. 

Lessons Learned and Limitations

1. IRB-Related Inefficiency: Once we identified the cohort of patients that met our inclusion criteria as medically underserved, we had to call the potential focus group participants without prior notification in order to stay aligned with the timeline proposed in the grant (as opposed to mailing flyers and waiting for a reply). Due to IRB regulations, only a person who had a previous clinical relationship with the patient could reach out to them initially. As such, the physician assistant (PA) on our team was the sole person who could make these calls. This was a substantial burden on her due to time constraints. Recruitment often required multiple calls for each patient. For future programs, we will build more time into the workflow for recruiting patients and include more eligible staff to conduct the recruitment.

2. COVID-19-Related Issues: The pandemic created multiple challenges to completing this program. First, there were limited opportunities to recruit patients in-person since fewer patients were coming into clinic during this time. Additionally, there were no opportunities to hand out or hang flyers in a waiting room area, which necessitated the calls mentioned above. Furthermore, we had to conduct the focus groups virtually which meant that we might have missed recruiting some of the patients with the highest need who may not have ready access to a phone or who may find Zoom to be a difficult platform to use (the rooms needed to have passcodes per the IRB, complicating the call-in feature of Zoom). Additionally, these recruitment calls were sometimes difficult to conduct with patients who were not English speakers. Our PA could use an interpreter when calling the patient, but if she had to leave a message, when the patient called back, the PA would need to bring in an interpreter on the spot while keeping the patient waiting on the phone.

3. Electronic Health Record (EHR) Reporting Inconsistencies: We faced inconsistencies in the EHR reporting system. There are many different aspects to IBD health maintenance (e.g., vaccines, dermatologic screening, cancer screenings, etc.), and these are often tracked inconsistently within the EHR. Some clinicians may use the notes field to indicate whether a screening has been completed while others will use a separate feature. Even when some fields were consistently entered, they did not pull into the reports consistently. As such, we often needed to conduct time-consuming chart reviews to make sure we were identifying the correct patients for our cohort.

Discussion

Even with the challenges faced, these focus groups proved to be very fruitful and produced invaluable insights into the needs of this patient population. However, we were not able to recruit enough participants to fill the number of focus groups we had planned due to the limitations outlined above. In order to gain further insight into barriers faced by our patient population, we decided to interview two providers in the IBD clinic. Ultimately, gaining the perspectives of both patients and providers allowed us to complete a well-rounded analysis of the experience within the IBD clinic. In their analysis, HRiA identified numerous themes that came to light, some of which were unexpected by the clinical care team. By doing these focus groups, we are able to plan more effective interventions to implement during the quality improvement project which we anticipate will lead to better patient outcomes.

While we often conduct provider interviews as a part of the current state assessment component of a quality improvement project, we do not often engage this deeply with the patients. This project further illustrated why it is so important to hear the perspective of the most important stakeholder — the patient. Going forward, we would like to conduct more patient focus groups as part of our QI initiatives to improve the trust between patients and their healthcare team and their overall care.

Funding

This quality improvement program is funded by an independent educational grant from Pfizer.

Natalie Sanfratello, MPH, is the program and contracts manager in the Boston University School of Medicine, Continuing Medical Education Office. Sanfratello works with the QI Hub, manages quality improvement initiatives across the organization and manages other commercially supported accredited continuing education programs. She completed quality improvement training through the Institute for Healthcare Improvement’s Model for Improvement. Sanfratello has managed a variety of quality improvement programs within Boston Medical Center and a Boston Healthnet Community Health Center. Most recently, she has managed an initiative to increase diabetic retinopathy exam referrals and show rates within the Boston Medical Center Ophthalmology clinic. Preliminary outcomes for that program show a 20% increase in show rates for patients overdue for their annual diabetic retinopathy screenings. Additionally, she helps to prepare and submit proposals to commercial supporters and prepare and execute business contracts and letters of agreement. Sanfratello earned her master of public health degree from Boston University School of Public Health in 2016.