Tuesday, December 12, 2006

The Crohn’s & Colitis Foundation of America Continues to Develop Intervention Efforts That Fail to Reach Non-Traditional Patients – Stacey Snyder

Traditionally, Inflammatory Bowel Disease (IBD) has been thought of as a disease primarily affecting whites; specifically American Jews of European descent. (www.ccfa.org). However, the incidence of Crohn’s disease and ulcerative colitis, conditions that fall under the purview of IBD, has been steadily increasing in minority populations within the United States (Basu, et. al., 2005). In fact, researchers have reported, “IBD is an ‘equal opportunity condition’ that afflicts comparable percentages of the population in cities and rural areas and that incidence is constant regardless of income level, race or ethnicity” (Ullrich, D., 2004). Additionally, in the sparse research that has been conducted on IBD and minorities, it has been found that disease presentation is clinically different between ethnicities. Studies have shown that, “African Americans compared to whites with CD had less ileal disease and more esophagogastroduodenal and perianal disease than whites. Hispanics compared to whites had a dramatically higher prevalence of perianal disease…These findings contribute to the sparse literature on the epidemiology and disease presentation of IBD in racial and ethnic minorities that have been underrepresented in previous population-based studies” (Nguyen, G., et al. 2006). The combination of the increase in IBD incidence among ethnic minorities in the United States combined with the finding that the disease presents itself differently in these populations, makes the Crohn’s & Colitis Foundation’s current lack of culturally aware intervention efforts glaringly insufficient.

In spite of the increase of Inflammatory Bowel Disease incidence in ethnic minorities, there has been no effort on the part of the Crohn’s & Colitis Foundation to increase minority employees within the organization (personal CCFA experience). This presents a large barrier to effective minority disease intervention. It has been shown that if the health message communicator and the individual receiving the health information are similar in background, there is a greater level of trust and willingness to adhere to treatment on behalf of the individual. In fact, “physicians and patients belonging to the same race or ethnic group are more likely to share cultural beliefs, values, and experiences in the society, allowing them to communicate more effectively and to feel more comfortable with each other” (Cooper-Patrick, L., et al., 1999). This is extremely important in managing a chronic illness such as IBD as it has been shown that, “about half of the patients with chronic illnesses, such as diabetes and hypertension, are non-compliant with their treatment regimens” (Thambirajah,M.S., 2005). The theory of persuasion and persuasive communication further documents this notion. This theory explains that there are, “four main variables in persuasive communication: the source (the communicator); the message (the characteristics of the message); the audience or recipients (the target at whom the message is directed); and the channel or medium through which the message is delivered” (Thambirajah, M.S., 2005). Further, “the more similar the communicator is to the audience in terms of age, gender, and ethnic background, the greater is the appeal. Many studies have shown that the background and values held by the communicator have a better effect on the audience if the audience is able to identify with them” (Thambirajah, M.S., 2005). Thus, the fact that the CCFA has made no effort to increase the number of minority employees as the number of minority patients increases will have a directly negative impact on treatment adherence and therefore poorer health outcomes within these groups.

The Crohn’s & Colitis Foundation of America has also failed to hire employees with minority culture knowledge and has not offered training for current CCFA employees in this area (personal CCFA experience). This lack of cultural knowledge has prevented, “health care practitioners from providing culturally competent health care that is responsive to the needs of a diverse population”(Cohen, J., www.diversityrx.org). As American society becomes increasingly diverse, “learning how to deliver culturally competent care…will take on even greater importance” (Cohen, J., www.diversityrx.org). Different minorities have different beliefs regarding health care. Further, “while American culture tends to be egalitarian in nature, other cultures are more autocratic , with decision-making authority reserved for certain family members or community leaders rather than the individual” (Hodgkinson, H., www.diversityrx.org). A CCFA staff with diverse cultural knowledge would have the necessary tools to provide Inflammatory Bowel Disease information to patients in a way that would be respected and adhered to according to their beliefs and customs. If it is understood how a patient comprehends medical information, who they turn to for medical advice, and how their medical decisions are made it will result in more effective management of their disease. As minorities are increasingly diagnosed with IBD this, “appreciation of the varying racial and ethnic perceptions, attitudes, and beliefs in patients with IBD” (Finlay, D., et. al., 2006) will become an obvious necessity.

In the educational literature the Crohn’s & Colitis Foundation of America provides, there is little offered in anything other than English (personal CCFA experience). Thus, Inflammatory Bowel Disease patients who do not use English as a first-language face an enormous information barrier when trying to further understand their disease. Of note, “mounting evidence demonstrates that barriers to health communication contribute to poorer access to care, quality of care, and health outcomes” (Calderón, J., et. al., 2004). As IBD increasingly becomes a more ethnically diverse disease, comprehension of the disease, management of the disease, and treatment adherence will continually decline if the CCFA does not include educational literature in languages other than English. Additionally, not only does this literature need to be available in other languages but it must also be written on a level that a patient can fully comprehend. It was shown, “in a study of 15 health-related documents used in high volume service areas at a large urban core safety-net hospital system, Spanish translations were available for 14 of the 15. However, in order to read the document for comprehension, reading skills at the college level were needed” (Calderón, J., et. al., 2004). Therefore, it is not only imperative that the CCFA have all educational literature on Inflammatory Bowel Disease written in several languages but a native speaker of each language must review and ensure that these documents are tailored to a reading level the population utilizing them can fully comprehend.

As a growing number of ethnic minorities are diagnosed with Inflammatory Bowel Disease, the Crohn’s & Colitis Foundation of America has failed to develop interventions that address these patients’ informational needs. However, if culturally competent, where culturally competent is described as, “the demonstrated awareness, inclusion, and integration of 3 population-specific issues in the delivery of health care: (1) health-related beliefs and cultural values, (2) disease incidence and prevalence, and (3) treatment efficacy” (L. Cooper-Patrick, et. al.,1999;) intervention efforts are developed in a timely fashion, this situation can improve. One conceptual framework that has been developed for working with ethnic minorities in a healthcare setting has the mnemonic ETHNIC. This technique involves: Explanation (listen to the patient’s story), Treatment (ask the patient what types of treatments including herbal and nutritional remedies, have been tried); Healers (ask the patient what other healers and health aids have been used); Negotiation (develop a therapeutic alliance with the patient); Intervention (mutually develop medical, spiritual, psychosocial, or education interventions); Collaboration (ask yourself, “Whom else do I need to work with in this person’s family of community?”) (Like, R., www.diversityrx.org). Unless the Crohn’s & Colitis Foundation of America develops interventions that are tailored to the needs of the rapidly expanding minority Inflammatory Bowel Disease patient population, the gap between adequate healthcare and this population will continue to widen.

Basu, D., MD, Lopez, I., MD, Kulkarni, A., MD, and Sellin, J., MD. Impact of Race and Ethnicity on Inflammatory Bowel Disease. American Journal of Gastroenterology, 2005; 100:2254-2261.
Calderón, J., MD, and R. Beltran, MD, MBA. Pitfalls in Health Communication: Healthcare Policy, Institution, Structure, & Process. MedGenMed, 2004; 6(1):9.
Cohen, J., MD. Treating and Managing the Care of Diverse Patient Populations: Challenges for Training and Practice. www.diversityrx.org.
Cooper-Patrick, L., MD, MPH, J. Gallo, MD, MPH, et al. Race, Gender, and Partnership in the Patient-Physician Relationship. JAMA, 1999; 292:6 583-589.
Finlay, D., MD, D. Basu, MD, and J. Sellin, MD. Effect of Race and Ethnicity on Perceptions of Inflammatory Bowel Disease. Inflammatory Bowel Diseases, 2006; 12:6 503-507.
Hodgkinson, H., PhD. How America is Changing: The Impact of Demographics and Cultural Diversity on Health Care. www.diversityrx.org.
Like, R., MD, MS. www.diversityrx.org.
Nguyen, G., MD, E. Torres, MS, M. Regueiro, MD, et al. Inflammatory Bowel Disease Characteristics Among African Americans, Hispanics, and Non-Hispanic Whites: Characteristics of a Large North American Cohort. American Journal of Gastroenterology, 2006; 101:1012-1023.
Thambirajah, M.S., MB, BS, FRCPsych. Psychological Basis of Psychiatry 2005; 127, 224-225.
Ullrich, D. Inflammatory Bowel Disease an “Equal Opportunity” Condition. Medical College of Wisconsin HealthLink, 2004. www.healthlink.mcw.edu


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