Editorial Note: this article is longer than our usual content. It is copied verbatim from the white paper of the same title. It captures the primary findings of the 18-month long project, “Engaging People of Color with Inflammatory Bowel Disease”.
Clinical trials for inflammatory bowel disease (IBD) have long exhibited significant racial disparities and a very low proportion of People of Color(1). This project’s aim is to better understand the lived experiences of People of Color with IBD which may have been missed in the homogenous history of research. In so doing, Patients Rising and its partners in this project may be able to develop learning opportunities to improve outcomes through learning opportunities.
We were able to measure attitudes regarding efficacy of and access to treatments of IBD, as well as levels of social comfort as patients living with IBD. Insights into the
- goals and expectation of treatment and
- levels of comfort in communication
may improve understanding of the experiences of People of Color. Similarly, these findings may help identify learning opportunities and improve the aims of clinical practices towards a more heterogenous IBD population.
Patients Rising, together with a coalition of partners and sponsors, built a project to better understand how Inflammatory Bowel Disease (IBD) impacted people of Color (POC). The project was titled, “Engaging People of Color with Inflammatory Bowel Disease” (“POCwIBD”). We developed a survey tool which was completed by 380 unique individuals. The survey was distributed by the partners to members of their constituency via standard dissemination strategies. Select partners received subcontracts to cover the costs of advertising.
Several articles have been published explaining the need for this project, including:
- Inflammatory Bowel Disease in People of Color: A Need for Better Understanding
- A Project to Better Understand IBD in People of Color
- IBD in People of Color
To understand participants’ attitudes, statements were made and participants were asked to agree or disagree with the statements on a spectrum of strongly disagree, disagree, neutral, agree, or strongly agree.
The objective was to measure attitudes regarding
- The efficacy of and access to treatments for IBD
- Social comfort as an IBD patient
Another objective was to gauge satisfaction with medication use, and learn about the experiences and attitudes towards clinical trials.
THE PEOPLE / PARTICIPANTS
POCwIBD was able to obtain valid results from 380 unique, self-identified Persons of Color. Their ages ranged from 3 (filled out by a parent) to 70, with the mean age being 33.67. Participants included 41.53% females, and 56.34% males, while the remaining 2.11% actively chose not to identify gender. The racial distribution leaned heavily towards Black or African American (70%) and included less than 10% each of Indigenous Americans, East Asians, South Asians, Southeast Asians, Native Hawaiians or OPI, and Whites (who co-identified with another race, or as Hispanic). Participants included patients, and parents or caregivers of patients.
Regarding inflammatory bowel diseases, 26.84% identified as Crohn’s Disease patients, 15.52% as Indeterminate Colitis, 49.47% as Ulcerative Colitis, and 8.15% as Unknown type.
ATTITUDES REGARDING THE TREATMENT OF IBD
One of our objectives was to measure attitudes regarding efficacy of and access to treatments for IBD. To measure this, we made 3 statements and asked participants to agree or disagree with them on a spectrum.
- Statement 1: “The goal of treatment is to experience no symptoms at all and live as if I do not have IBD”
- Statement 2: “I have not had an effective treatment for my IBD, so I am better off trying to manage it on my own”
- Statement 3: “The price of pharmaceuticals prevents me from getting the care I need”
THE PRICE OF PHARMACEUTICALS
When responding to the statement, “The price of pharmaceuticals prevents me from getting the care I need”, a significant number of respondents (+6.61%) expressed agreement over disagreement (38.35% vs 31.74%), or took a neutral stance towards it (29.89%).
Elsewhere in the survey, participants were asked about “obstacles (they) faced when seeking care and treatment”. Of the list of 16 possible obstacles, the price of pharmaceuticals came in position 11, with a 17.1% response.
|Rank out of 16||OBSTACLE||%|
|10||Length of time it took to get a formal diagnosis||18.15%|
|11||Price of pharmaceuticals||17.10%|
|12||Out of pocket costs (copays, uncovered treatments, deductibles, medical supplies not covered by insurance, etc.)||14.21%|
|13||My provider doesn’t understand my culture and customs||9.73%|
This inquiry over-simplifies the complex issue of the cost of medication. The survey could not, for instance, distinguish ‘cost of drugs’ from ‘cost sharing for prescriptions’, ‘accessibility to drug coupons’, or attitudes towards manufacturers versus pharmacy benefit managers. A future survey would need to be designed differently to better understand the nuance.
AM I BETTER OFF ON MY OWN?
We used this statement to gauge efficacy of and access to treatments for IBD. A majority expressed agreement with the statement “I have not had an effective treatment for my IBD, so I am better off trying to manage it on my own”.
In searching for correlations, we found that participants with Crohn’s Disease were slightly (+5.03%) more likely than those with UC, IC, or UNK to express agreement. This could suggest a difference in attitude towards the perceived gains or benefit in treatment for CD.
Elsewhere in the survey, 31 participants stated that they did not mind taking medication for (their) IBD, but (would only do so when they are) experiencing symptoms. Those 31 participants possibly represent an acute view to treating symptoms versus a long view, or preventive one. So it was interesting when all 31 of these (100%) also agreed with the ‘I Have Not Had an Effective Treatment’ statement. This led us to think there could be value in investigating whether patients using preventive therapies(2) have an overall better attitude towards the treatment regimen for their IBD versus those using therapies only in response to symptoms.
What is the goal of treatment?
We used the statement, “The goal of treatment is to experience no symptoms at all and live as if I do not have IBD” to understand the expectations for chronic care management. IBD is incurable, therefore well-informed patients would be less likely to consider “no symptoms at all” to be a realistic expectation. A bonus-intention was to learn if providers were adjusting the expectations of patients living with IBD.
When looking at responses, there was not a strong difference between the total agree categories (37.36%) and the disagree categories (34.21%). However we did find that a significantly higher percentage of respondents (+16.38%) Strongly Disagreed (43.84%) with the statement versus those who Strongly Agreed (27.46%), suggesting that participants, when they did disagree, did so with more conviction.
measurements of social comfort
By better understanding how patients feel about certain social activities including conversation, we hoped to identify whether there was a need for learning opportunities in socialization or communication. To achieve this we made statements and asked participants to agree or disagree with them on a spectrum.
COMFORT TALKING ABOUT IBD WITH THEIR DOCTOR
We presented the statement, “I am comfortable talking about IBD with my doctor”.
|Strongly Disagree||Disagree||Neutral||Agree||Strongly Agree|
NOTE: “Generalized” in the context below refers to a combining of Agree + Strongly Agree, and of Disagree + Strongly Disagree to come up with a “general” agreement or disagreement.
This reveals a significantly larger (+5.82%) strong-disagreement (16.13%) versus strong-agreement (10.31%). However, when ‘strong’ and ‘normal’ responses are combined into general agreement and general disagreement, the difference between the two (37.56% vs 32.80%) is less significant (+4.76%).
COMFORT USING THE BATHROOM IN OTHER PEOPLES’ HOMES
We presented the statement, “When visiting someone’s home, I am comfortable using or asking to use their bathroom”.
|Strongly Disagree||Disagree||Neutral||Agree||Strongly Agree|
There was a significantly stronger (+12.7%) agreement (40.73%) over disagreement (28.03%) when the results were generalized.
While the survey wasn’t designed to offer more insight into why this statement seems more agreeable, we did find that those agreeing with the statement were twice as likely to practice meditation / mindfulness / breathing exercises compared to the disagreement group. Since IBD is a chronic condition it would be interesting to learn more about the role of such self-care and self-soothing practices for net wellness.
COMFORT WITH MEDICAL TERMS IN SOCIAL SETTINGS
When we presented the participants with the statement “I am comfortable using medical terms like “anus”, “rectum”, “stools”, and “intestines”” we saw an interesting difference. A significant percentage of participants (+6.45%) agreed they were more comfortable when talking with family and friends than when talking with their doctor. Otherwise, despite some minor variations, there was little difference between the two audiences, and ultimately participants felt neutral about the use of these medical terms in general.
Overall, there may be a good reason to explore personal and familial communication strategies among POC with IBD. If the level of comfort communicating with one’s doctor is suffering, it could indicate a need for better communication strategies between patient and doctor. Likewise, it would be interesting to know more about the risks and benefits of freer communication with family and friends.
ATTITUDES AND EXPERIENCE WITH CLINICAL TRIALS
Participants were presented with the statement, “A Clinical Trial is a research study performed with people and is aimed at learning more about a medical, surgical, or behavioral treatment or test. To better understand your attitude or experience with clinical trials, please select any of the statements that apply to you.”
|a||A healthcare professional has never talked to me about clinical trials||76||20.10%|
|b||I have had a clinical trial explained to me by a healthcare professional||153||40.47%|
|c||I have participated in a clinical trial||80||21.16%|
|d||I would take the time to seriously consider participating in a clinical trial||141||37.30%|
|e||The history of human abuses in research is one reason I do not trust research||88||23.28%|
|f||Clinical trials do not benefit different races and/or ethnicities equally||81||21.42%|
|g||I do not trust that researchers tell clinical trial participants the truth||44||11.64%|
|h||Clinical trials do not disclose the true risks and benefits of participation||16||4.23%|
It was interesting to see that twice as many participants ( 40.47% vs 20.10%) had experienced having a clinical trial explained to them by a healthcare professional. However, the percentage of respondents that actually participated in a clinical trial (21.16%) was nearly half of those to whom a clinical trial had been explained by a healthcare professional. We can’t draw many conclusions from this because we didn’t ask why people didn’t participate. It could have been related to challenging inclusion criteria, or failed pre-screening, or lack of interest – any number of reasons. However, seeing that 37.3o% would take the time to seriously consider a trial is encouraging for the future of inclusivity in clinical trials.
We are not inclined to attribute the lower percentage of patients participating in clinical trials to general distrust of clinical trials. The statements “I do not trust that researchers tell clinical trial participants the truth” and “Clinical trials do not disclose the true risks and benefits of participation” do not seem to be overly influential (11.64% and 4.23% respectively) to POC with IBD.
limitations OF THE project
The nature of the survey precludes a nuanced analysis of participants’ beliefs. This is why the results of this study are merely an element of ongoing conversations with People of Color with inflammatory bowel disease.
At the time of the development of the survey, “microscopic colitis” was not included as a category of IBD.
The recruitment efforts for this project were carried out by patient support organizations (PSOs) including Color of Crohn’s and Chronic Illness, IBD Moms, Healthline and Patients Rising. Therefore this sample does not reflect the average person of Color with IBD but rather those who are already at least somewhat engaged with supportive sources. This could result in better health literacy, patient confidence, and improved understanding and communication.
We see that People of Color with inflammatory bowel disease may have some relatively healthy perspectives about their disease. They seem to strongly disagree with unrealistic goals for treatment, though Crohn’s Disease patients may be more inclined to be less satisfied with the impact of treatment. We also observed what may be a difference in satisfaction with treatment between those who embrace long-term / preventive treatment over those who treat symptoms alone.
There also may be signs that patients are more comfortable discussing their disease among family and friends than they are with their doctor, even when using frank medical terms. Additionally, participants seem not to be especially distrustful of clinical trials. The relatively high rate of participants having had clinical trials explained to them by healthcare professionals might be an indication of improvement in attempts to engage People of Color in research, but, it doesn’t necessarily translate into actual participation, leaving an open question as to why the disparity persists.
Overall, enough was learned to prompt learning materials in the arena of improved communication with healthcare providers and the merits of participation in clinical trials to begin with.
- Cohen NA, Silfen A, Rubin DT. Inclusion of Under-represented Racial and Ethnic Minorities in Randomized Clinical Trials for Inflammatory Bowel Disease. Gastroenterology. 2022 Jan;162(1):17-21. doi: 10.1053/j.gastro.2021.09.035. Epub 2021 Sep 22. PMID: 34562464; PMCID: PMC8678318.
- Abegunde AT, Muhammad BH, Ali T. Preventive health measures in inflammatory bowel disease. World J Gastroenterol. 2016 Sep 14;22(34):7625-44. doi: 10.3748/wjg.v22.i34.7625. PMID: 27678347; PMCID: PMC5016364.
As the Director of Patient Outreach at Patients Rising, Jim works very closely with the people to help them tell their stories. Jim is a Columbia University trained writing consultant and has worked closely with writers of all levels of skill to help them find and refine their voices. He is a writer, editor, author and certified medical assistant with over 20 years of experience in healthcare. Jim has spent over two decades in clinical care and research at some of New York’s biggest health institutions doing hands-on patient care, education and advocacy for rare disease patients. He has worked with several non-profit patient support organizations doing outreach, advocacy and creating educational content. Twitter / Linkedin