Gladys Onojobi

Perceived Discrimination in Health Care Is Associated With a Greater Burden of Pain in Sickle Cell Disease

CONTEXT Perceived discriminatory experiences in society have been associated with a higher burden of pain among some minority patient populations. OBJECTIVES To describe the extent to which patients with sickle cell disease (SCD) perceive discrimination from health care providers and to examine the association of these experiences with the burden of chronic SCD pain. METHODS Cross-sectional analysis of data collected at baseline of a prospective cohort study of SCD patient experiences of care (n = 291). Perceived race-based and disease-based discrimination from health care providers were measured using subscales adapted from the Interpersonal Processes of Care Survey. Discrimination scores were examined for their association with patient characteristics and measures of pain burden using descriptive, bivariate, and multivariate analytic techniques. RESULTS Respondents reported a greater burden of race-based discrimination from health care providers than has been previously reported by African Americans, and they reported a greater amount of disease-based vs. race-based discrimination. Age and having difficulty persuading providers about pain were the only patient characteristics independently associated with race-based discrimination, whereas older age, greater emergency room utilization, having difficulty persuading providers about pain, daily chronic pain, fewer good days during a week, and a higher severity of pain on their good days were independently associated with greater disease-based discrimination. CONCLUSION Perceived disease-based, but not race-based, discrimination was found to be associated with a greater range of self-reported pain among patients with SCD. If causal, this finding could signal an important new approach to mitigating the burden of pain experienced by persons with SCD.

The Measure of Sickle Cell Stigma: Initial findings from the Improving Patient Outcomes through Respect and Trust study

Research about the influence of stigma on health outcomes in sickle cell disease is limited. We administered the recently developed Measure of Sickle Cell Stigma to 262 patients in the United States. The Measure of Sickle Cell Stigma yielded very good internal consistency and four interpretable factors. Significant associations among stigma, pain-related healthcare utilization, and perceived disease severity were observed for three of the four stigma factors (F range = 2.78–5.44). The Measure of Sickle Cell Stigma appears to be a useful tool for measuring disease-specific stigma among adults living with sickle cell disease, and further assessment of its clinical utility is warranted.

An unequal burden: Poor patient-provider communication and sickle cell disease

OBJECTIVE To assess disparities in the quality of healthcare provider communication experienced by African-American adults with and without sickle cell disease (SCD) in the U.S. METHODS Poor provider communication was assessed by the Provider Communication subscale of the Consumer Assessment of Healthcare Plans and Systems survey. The SCD sample was obtained from participants in a multicenter observational study of healthcare experiences. The national African-American sample data was obtained from published national estimates. RESULTS The SCD sample was more likely than the national sample to report poor communication in 3 out of 4 communication domains: listening (22.3% vs. 11.5%, p<0.0001); showing respect (26.1% vs. 9.5%, p<0.0001); and spending enough time (38.3% vs. 16.2%, p<0.0001). Differences were consistent in young, but not old, patients and showed some variation by self-reported health status and education. CONCLUSIONS The communication difficulties experienced by persons with SCD do not appear reducible to their predominantly African-American race, but may result from more disease-specific factors. PRACTICE IMPLICATIONS Healthcare providers should take particular care in recognizing and demonstrating recommended communication skills with SCD patients as these patients may be particularly vulnerable to, and cognizant of, poor quality interactions.

Ferroportin q248h, Dietary Iron, and Serum Ferritin in Community African‐Americans With Low to High Alcohol Consumption

BACKGROUND Alcohol consumption is associated with increased iron stores. In sub-Saharan Africa, high dietary ionic iron and the ferroportin Q248H allele have also been implicated in iron accumulation. We examined the associations of ferroportin Q248H, alcohol and dietary iron with serum ferritin, aspartate aminotransaminase (AST) and alanine aminotransaminase (ALT) concentrations in African-Americans. METHODS Inner-city African-Americans (103 men, 40 women) were recruited from the community according to reported ingestion of >4 alcoholic drinks/d or <2/wk. Typical daily heme iron, nonheme iron and alcohol were estimated using University of Hawaiis multiethnic dietary questionnaire. Based on dietary questionnaire estimates we established categories of < versus > or =56 g alcohol/d, equivalent to 4 alcoholic drinks/d assuming 14 g alcohol per drink. RESULTS Among 143 participants, 77% drank <56 g alcohol/d and 23%> or =56 g/d as estimated by the questionnaire. The prevalence of ferroportin Q248H was 23.3% with alcohol >56 g/d versus 7.5% with lower amounts (p = 0.014). Among subjects with no history of HIV disease, serum ferritin concentration had positive relationships with male gender (p = 0.041), alcohol consumption (p = 0.021) and ALT concentration (p = 0.0001) but not with dietary iron intake or ferroportin Q248H. Serum AST and ALT concentrations had significant positive associations with male gender and hepatitis C seropositivity but not with alcohol or dietary iron intake or ferroportin Q248H. CONCLUSIONS Our findings suggest a higher prevalence of ferroportin Q248H with greater alcohol consumption, and this higher prevalence raises the possibility that the allele might ameliorate the toxicity of alcohol. Our results suggest that alcohol but not dietary iron contributes to higher body iron stores in African-Americans. Studies with larger numbers of participants are needed to further clarify the relationship of ferroportin Q248H with the toxicity of alcohol consumption.

Attitudes toward clinical trials among patients with sickle cell disease

Background A substantial number of planned clinical trials for sickle cell disease (SCD) have terminated early due to insufficient patient enrollment. Purpose To describe attitudes toward clinical trials among a sample of adults with SCD and identify patient-level factors associated with these attitudes. Methods Our data came from a sample (N = 291) of primarily adults with SCD participating in the Improving Patient Outcomes with Respect and Trust (IMPORT) study, which is a federally funded observational study of SCD patient experiences in seeking healthcare. Attitudes toward clinical trials were assessed using items from the Perceptions of Participation in Clinical Research instrument. Patient factors examined as potential correlates of clinical trial attitudes were demographics, disease severity, engagement in self-care, trust, healthcare experience ratings, and prior history of participation in clinical trials. Multiple regression analyses were used to identify patient-level correlates of clinical trial attitudes. Results Our sample of SCD patients expressed overwhelmingly favorable attitudes about clinical trials, with 77%–92% of our sample expressing agreement with a series of positive statements about clinical trials in general. Demographics, engagement in self-care, healthcare experience ratings, and prior trial participation each explained significant portions of the variability in clinical trial attitudes. Limitations The generalizability of our results to the entire SCD population may be of concern as the study participants were all receiving care at comprehensive sickle cell centers and already participating in clinical research. Conclusion Our results suggest that, in principle, adults with SCD enrolled in an observational study express very positive general attitudes about clinical trial participation and that specific factors attached to particular clinical trial opportunities may play a greater role in a SCD patient’s decision to participate than a general unwillingness to participate.

COMPLETE BLOOD COUNT, MEASURES OF IRON STATUS AND INFLAMMATORY MARKERS IN INNER-CITY AFRICAN AMERICANS WITH UNDIAGNOSED HEPATITIS C SEROPOSITIVITY

BACKGROUND Hepatitis C virus (HCV) infection may be associated with thrombocytopenia and increased iron stores in patients receiving medical care. We aimed to determine how often changes in hematologic, iron metabolic and inflammatory markers occur in individuals with undiagnosed HCV in the community. METHODS Inner-city African Americans (n=143) were recruited from the community according to reported ingestion of alcohol. They were divided broadly into those who drank more or less than 56 g alcohol/day as assessed by dietary questionnaire. HCV serology was determined and laboratory values were compared according to HCV seropositivity in analyses that adjusted for alcohol consumption. RESULTS The prevalence of HCV seropositivity was 23% among men and 29% among women. Levels of hepatocellular enzymes were higher with HCV seropositivity (P<0.0001) but hemoglobin concentrations, white blood cell and platelet counts and serum ferritin concentrations did not differ. The globulin fraction of the serum protein concentration (P=0.002) was increased with HCV seropositivity as expected with chronic inflammation. However, erythrocyte sedimentation rate and serum iron and haptoglobin levels did not differ significantly according to HCV status. Furthermore, multivariate analysis revealed that C-reactive protein was decreased and transferrin concentration was increased with both HCV and alcohol consumption (P<0.014). CONCLUSIONS Previously undiagnosed HCV seropositivity has little effect on the complete blood count and body iron stores but appears to perturb the response to an inflammatory stimulus, causing reduced rather than increased circulating CRP concentrations and increased rather than decreased transferrin concentrations.

Case studies evaluating transdermal continuous oxygen for the treatment of chronic sickle cell ulcers.

OBJECTIVE: Refractory leg ulcerations are common in homozygous sickle cell anemia. In this case series, patients were treated with transdermal continuous oxygen therapy (TCOT), based on the hypothesis that oxygen deprivation caused by arteriovenous shunting may be remedied by providing oxygen directly to the wound bed. The authors believe this is the first attempt to treat sickle cell ulcers with TCOT. CASE PRESENTATION: Five patients with long histories of recurring sickle cell disease ulcers that would not heal with various conventional and/or other adjunctive wound healing modalities were treated with TCOT. The patients had recurring nonhealing wounds for 30, 21, 20, 20, and 15 years, respectively. All 5 patients healed or showed substantial improvement in the treatment periods of 3 to 36 weeks. CONCLUSION: The authors conclude that TCOT may be a novel, effective, and inexpensive modality in treating patients with sickle cell disease ulcers. Improvement was typically noticeable within 2 weeks. Further clinical trials may be considered to evaluate the efficacy of TCOT in sickle cell ulcers.

Preventing delayed hemolytic transfusion reactions in sickle cell disease

Delayed hemolytic transfusion reactions (DHTRs) are the most serious consequences of transfusion-related red blood cell (RBC) alloimmunization. They occur in 3% to 7% of transfused sickle cell disease (SCD) patients, and 4% to 12% of DHTRs may be fatal. Delayed hemolytic transfusion reactions are generally not the consequence of primary alloimmunization, because the titer of most newly formed RBC antibodies rises slowly over several weeks. By the time the titer is high enough to induce RBC destruction, the number of circulating donor RBCs that elicited the primary antibody response is too low for clinically significant hemolysis. However, nearly 50% of RBC antibodies formed as a result of primary immunization are evanescent, becoming serologically undetectable within about 1 year after the alloimmunizing transfusion. Evanescent antibodies place sporadically transfused patients with SCD at a high risk for DHTRs, which are typically secondary or anamnestic reactions after transfusion of RBCs bearing the antigen(s) that elicited the evanescent antibody(ies). The titer of the previously formed antibody, undetectable by pretransfusion serologic screening, rapidly rises over several days posttransfusion, while large numbers of transfused RBCs susceptible to hemolysis are still circulating. The ensuing delayed hemolytic process is rendered even more severe by the common appearance of auto-antibodies that cause hyperhemolysis, probably from an innocent bystandertype reaction. The risk of DHTRs should be lower in regularly transfused patients with SCD, because antibody screening tests are performed at about monthly intervals after each transfusion in preparation for the next scheduled transfusion. These tests would be expected to help prevent DHTRs by allowing documentation of primary alloimmunization before evanescent antibodies become serologically undetectable. For example, in a 6-year study of adults with SCD, no DHTRs were observed among 49 individuals who were enrolled in regular exchange transfusion programs and were exposed to a total of 10,112 RBC units, whereas four such reactions occurred in 139 sporadically transfused patients (2.9%) who received a total of 2674 units. Despite alloimmunization rates of 4% to 16%, only two DHTRs were reported in 287 children with SCD who were randomized to receive monthly transfusions in four clinical trials for the prevention of central nervous system complications. In two of those trials, a total of 4757 RBC units were transfused to 162 children with SCD. Similarly, only seven of 237 thalassemic patients (2.1%) who were receiving regular transfusions for a mean of 18.5 years developed DHTRs, compared with two of 38 patients (5.2%) who received sporadic transfusions (E. Vichinsky, personal communication). Although none of these differences are statistically significant, they tend to support the DHTR mechanisms we describe. Routine serologic testing has been suggested for all patients with SCD after each transfusion episode, and a centralized recipient database to improve transfusion safety in these patients has been recommended. We would like to call attention to and endorse these recommendations. Limited longitudinal data are now available on the incidence and timing of antibody appearance in primary alloimmunization. Among 322 adults without SCD who were transfused for the first time, 16 individuals eventually developed antibodies, and only six (38%) had formed them within 6 weeks after transfusion. The new antibodies in the remaining 10 patients were ascertained by a single follow-up test done from 4 to 6 months after transfusion. The time interval between a transfusion and the appearance and evanescence of newly formed RBC antibodies may be different in SCD, and the precise determination of this interval will require prospective studies. Until results from those studies are available, we propose that sporadically transfused patients with SCD undergo routine testing for new antibodies at 2 and 3 months after each transfusion to prevent most DHTRs. Adopting such a policy seems especially important now that the routine use of ethnically and/or antigenically “matched” RBCs for transfusing patients with SCD has resulted in increased formation of uncommon antibodies, such as Go, V, and VS, as well as antibodies related to the highly polymorphic Rh blood group antigens in African populations. Rh antigens also can elicit serologic patterns that mimic autoantibody formation with Rh specificity, so that Rh genotyping is frequently required to identify the incompatibility. Such Rh genotyping can take time and ideally should occur during primary immunization, which is not accompanied by severe hemolysis or urgency in identifying compatible RBC units. We also stress the need for a centralized database of transfusion and antibody information on patients with SCD. Without an accessible and nation-wide, computerized information-storage system, the detection of evanescent antibodies may not benefit some patients with SCD, because many receive their sporadic transfusions at multiple healthcare sites, a circumstance that increases the risk of DHTR.

Abstract 3853: Predictive and prognostic analysis of KRAS and MSI markers in treatment of urban African American colorectal cancer patients

Proceedings: AACR Annual Meeting 2014; April 5-9, 2014; San Diego, CA Background: Advancement of molecular analytic techniques has led to the discovery of a number of genetic biomarkers thought to be associated with prognosis and treatment outcomes in colorectal cancer (CRC). Aim: To analyze response to treatment in a group of CRC patients as a function of their genetic background. Method: A retrospective chart review of patients diagnosed with CRC from 2010- 2012 at Howard University Hospital was undertaken. African American (AA) patients diagnosed with CRC, the majority of whom received 5-Fluorouracil based chemotherapy, were selected. Data was collected from in-patient and out-patient records. Response to treatment was determined by Response Evaluation Criteria In Solid Tumors (RECIST) criteria from prior radiological investigations. The data was analyzed using Kaplan-Meier survival estimate and log rank test to compare the disease free survival (DFS) in correlation with clinical and genetic markers. Results: There were 30 AA patients with CRC who received chemotherapy. The average age of the cohort was 59 years, 53 % (n=16) were females and 80% (n=24) of the CRCs were distal. There were 10% (n=3), 23% (n=7), 37% (n=11), and 30% (n=9) patients at stage I, II, III, and IV, respectively. After three years of follow-up, disease free survival was 0.37 (95%CI: 0.14-0.60). Patients with MSI-H (n=3) had worse DFS. Patients with wild-type (WT) KRAS (n=16) had better DFS than mutant KRAS (n=10). The type of chemotherapy received did not affect response. Conclusions: DFS was worse in patients with a higher stage at the time of diagnosis, as well as, in patients with MSI-H versus MSS. Further study is warranted in AA since CRC patients with MSI-H historically have a better prognosis. DFS was found to be better in patients with WT KRAS, independent of chemotherapeutic regimen. These findings confirm that KRAS mutations negatively affected the prognosis in our study population. View this table: Table 1 Characteristics of Responders vs Non-responders Citation Format: Priya Gopie, Maryam Yazdy, Bashira Giwa, Sanjeev Solomon, Gladys Onojobi, Seyed-Mehdi Nouraie, Bonnie Davis, Kamyar Sartip, Shokrani Babak, Lee Edward, Hassan Brim, Hassan Ashktorab. Predictive and prognostic analysis of KRAS and MSI markers in treatment of urban African American colorectal cancer patients. [abstract]. In: Proceedings of the 105th Annual Meeting of the American Association for Cancer Research; 2014 Apr 5-9; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2014;74(19 Suppl):Abstract nr 3853. doi:10.1158/1538-7445.AM2014-3853

Abstract 5018: Adherence to free breast cancer screening among uninsured black and Hispanic women

Background: Studies have shown that blacks have a higher mortality rate from breast cancer. However, it is unclear if this can be mainly attributed to their different biological susceptibilities or lower health care access or lack of adherence to scheduled procedures such as screenings and treatments or a combination of everything. Aim: We sought to examine the extent to which uninsured black and Hispanic women adhere to free breast cancer screening appointments. Methods: This study included a cohort of 410 participants from a monthly program in Howard University Cancer Center that offers free breast cancer screening (clinical breast examination and mammogram) for uninsured women who are aged 40 and older in the Washington DC area. These participants were referred from community health organizations in Maryland, District of Columbia and Maryland. Data was extracted from July 2009 to June 2010. The participants were categorized as non-adherent (no shows) if they did not cancel their appointments and did not show up for the breast cancer screening. We used Poisson regression models to evaluate the association of race with adherence to the scheduled breast cancer screening and adjusted for potential confounders. We calculated Relative Risks (RR) for no shows and 95% Confidence Intervals (CI). Results: There were 195 (47.6%) Hispanic and 215 (52.4%) black women. A total of 314 (76.6%) women showed up for screening but 96 (23.4%) were non-adherent. When compared with Hispanic women, black women were older (mean age = 50.7 years vs 48.4 years; P = 0.0005), and more likely to be born in the United States (29% vs 2%; P Conclusions: There is a high rate of non-adherence to scheduled free breast cancer screening among underserved black and Hispanic women. Increased outreach effort and community education about this potentially preventable cancer is needed. Citation Format: {Authors}. {Abstract title} [abstract]. In: Proceedings of the 102nd Annual Meeting of the American Association for Cancer Research; 2011 Apr 2-6; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2011;71(8 Suppl):Abstract nr 5018. doi:10.1158/1538-7445.AM2011-5018