The figure depicts the consent rate over time for all, Hispanic, and non-Hispanic donors. There was a significant increase in the consent rate during the time period for all donors, which was owing to the significant increase in consent rate over time among Hispanic Americans.
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Salim A, Ley EJ, Berry C, et al. Effect of Community Educational Interventions on Rate of Organ Donation Among Hispanic Americans. JAMA Surg. 2014;149(9):899–902. doi:10.1001/jamasurg.2014.1014
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The need for suitable organs for transplantation is especially pronounced in minority populations such as Hispanic Americans owing to disproportionately high rates of diabetes mellitus and kidney disease. Considerable barriers exist for Hispanic Americans consent to donation, resulting in significantly lower donation rates compared with white individuals.
To investigate the effect of an aggressive outreach intervention during a 5-year period aimed at improving organ donation rates among Hispanic Americans.
Design, Setting, and Participants
Prospective longitudinal observation study of organ donors treated at a major metropolitan level I trauma center. The center provides most of the medical care to the 4 Southern California neighborhoods with a high percentage of Hispanic Americans that were included in the study.
Television and radio media campaigns and culturally sensitive educational programs implemented at high schools, churches, and medical clinics in the target neighborhoods.
Main Outcome and Measure
Consent rate for organ donation recorded during the study.
Outreach interventions started in 2007 and were completed by 2012. Of 268 potential donors, 155 total donors (106 Hispanic Americans) provided consent during this time. A significant increase in consent rate was noted among Hispanic Americans, from 56% in 2005 to 83% in 2011 (P = .004); this increase was not evident in the population that was not Hispanic (67% in 2005 and 79% in 2011; P = .21).
Conclusions and Relevance
Aggressive outreach programs can reduce the disparity between organ supply and demand by improving the consent rate among the target group.
As of January 19, 2013, there were 120 796 individuals awaiting an organ transplant in the United States.1 Despite the success of transplantation, nearly 20 people die each day waiting for an organ.1 Although the organ shortage affects all ethnic groups, it is more pronounced in minority populations. There have been ongoing efforts to address this discrepancy between organ supply and demand, all with varying results. Our research team has focused on improving donation outcomes among Hispanic Americans. Interventions have included educational programs at high schools,2,3 churches,4 and local community clinics, as well as local media campaigns.5-7 The overall results have been favorable, with observed improvements in organ donation knowledge and awareness3-7 and an increase in the intent to donate organs.3,5
The optimal outcome to assess the efficacy of donation interventions would be an observed increase in actual donation and donation registrations. The goal of this study was to measure how our interventions affected organ donation rates at the primary medical center that provided care for the population studied. Our hypothesis was that the favorable donation interventions would lead to an increase in the consent rate for organ donation during the time of the interventions.
This study is one of several components of a project intended to increase organ donation rates in Los Angeles County. This study was approved by the institutional review board of Cedars-Sinai Medical Center. Written and verbal consent was obtained for the appropriate interventions, ie, high schools and churches, respectively, before the conduction of their respective surveys.
Four Southern California neighborhoods with high percentages of Hispanic Americans in close proximity to a major metropolitan level I trauma center that provides most of the neighborhoods’ care were identified using United States Census data.8 The target neighborhoods were identified by zip code. Three of the neighborhoods were study communities where the interventions were implemented and 1 served as the control community, with no interventions. All target neighborhoods were within a 5-mile radius of the Los Angeles County and the University of Southern California Medical Center (LAC + USC), where all of the donation data were obtained.
The interventions included educational programs at high schools,2,3 churches,4 and local community clinics, as well as local media campaigns.5-7 Details of the interventions have been described previously.2-7 For the community clinic intervention, 4 primary care clinics in the target neighborhoods were identified. Kiosks containing organ donation educational material and donor registry forms were provided at each clinic for 7 weeks. The intervention was designed to allow the kiosks to be unstaffed for 3 weeks, staffed for 1 week, and then unstaffed for the remaining 3 weeks. For the 6 weeks that the kiosks were unstaffed, the educational material and registry forms were available for any participant who was interested. For 1 week, the kiosks were staffed by individuals from the local organ procurement organization, OneLegacy. These individuals were either members of donor families or organ recipients who were available to answer questions regarding organ donation. Forms were available at all times for immediate registration with the California organ donor registry. The number of patient encounters and patients who signed up for the registry were recorded and analyzed.
The records of patients referred to OneLegacy for possible organ donation between 2005 and 2011 were reviewed. Data regarding the numbers of referrals for organ donation, potential donors, actual donors, and family rates of decline or consent were recorded. Demographics including age, sex, and ethnicity of all donors were also recorded.
Polynomial contrasts were used to test the trend of mean age from 2005 through 2011. Linear, quadratic, and cubic contrasts were tested with 1 degree of freedom. When no particular patterns of difference were found among the means, we reported the result of the linear contrast test. The Cochran-Armitage trend test was performed to examine the trend of proportion of male individuals and Hispanic Americans over time, as well as the trend of the consent rate from 2005 through 2011. The consent rate among potential donors was calculated using the number of consented participants divided by the number of potential donors. SAS statistical software (version 9.1; SAS Institute) was used to conduct all analyses.
During the study period, 25 724 people were contacted using the educational interventions at high schools,2,3 churches,4 local community clinics, and local media campaigns.5-7 The demographics have been described previously.2-7 In addition, there were 1086 referrals, 183 potential donors, and 155 actual donors. Table 1 describes the demographics of all 3 groups. For actual donors, differences in male sex, age, and percentage with Hispanic ethnicity did not change over time (Table 1).
Table 2 provides the consent rates of the study population by year. As noted in Table 2 and the Figure, there was a significant increase in the consent rate during the time period for all donors (P = .02). When analyzed by ethnicity, Hispanic Americans maintained a significant increase in consent rate over time (P = .004), whereas participants who were not Hispanic Americans did not (P = .21).
The aim of this study was to determine if community education interventions that target Hispanic Americans increased the consent rate for organ donation at the hospital that provides most of the care for the target population. We observed a significant increase in the consent rate over time. More important, this increase was owing to a rise in the consent rates among Hispanic Americans, with no change observed among those who were not Hispanic Americans, suggesting a beneficial effect of our education interventions over time.
Our research team has chosen to address the organ shortage among Hispanic Americans for a number of reasons.2-7 First, it is well documented that the Hispanic American community is the fastest growing minority population in the United States. The Hispanic American population is projected to more than double in the United States, from 53.3 million in 2012 to 128.8 million in 2060. Nearly 1 in 3 US residents will be Hispanic American by 2060.9 In California, Hispanic Americans are expected to become the state’s largest ethnic group by 2025 and will account for 41% to 47% of the population.10
Second, along with Hispanic Americans population growth, there is a disproportionate rise in transplant need. Hispanic Americans have higher rates of obesity, type 2 diabetes mellitus, and end-stage renal disease compared with the general population.11 These diseases correlate with an increased need for organ transplantation. Currently, Hispanic Americans represent 16.9% of the US population and account for 18.1% of the candidates on the organ donation waiting list.1 With the projected increase in the Hispanic American population, this disparity will only increase.
Finally, while there has been a dramatic increase in the number of Hispanic Americans on organ donation waiting lists, the Hispanic American population is 60% less likely to donate organs than white individuals.3 A large presence on the waiting list, along with a historical lack of intent to donate, makes the Hispanic American community a prime population on which to focus resources and educational efforts.5
Our previous interventions2-7 have demonstrated a significant increase in the overall knowledge, awareness, and beliefs regarding donation; however, the change in intent to donate was variable. Given this variability, evaluating organ donation consent rate is a more effective outcome measure. Our study was designed to evaluate consent rate over time for organ donation at the LAC + USC, the largest health care provider in Los Angeles County. Hispanic Americans make up most of the patient population at this medical center, and LAC + USC is one of the highest ranking in the nation in terms of referrals for organ donation; thus, measuring consent rates over time is a reliable long-term measure of the effectiveness of community educational interventions.
There are a number of limitations to the study that should be mentioned. Although there was an increase in the consent rate over time during the study period, it may not be completely attributable to our interventions. At best, this may just be an association. To our knowledge, there were no other specific interventions targeting Southern California communities during the study period, but the study population could have been exposed to other sources of information regarding donation. However, the lack of improvement in donation rate among those who are not Hispanic suggests our targeted intervention may have been responsible for the increased donation rate among Hispanic Americans. Our interventions continued until 2012, whereas our data collection was only through 2011. We are in the process of obtaining 2012 and 2013 data and are optimistic that they will support our conclusions. Another ideal outcome measure is the number of people who actually register to be an organ donor (donor designation). We are in the process of obtaining these data from the Department of Motor Vehicles. Because the long-term effects of our interventions are mostly unknown, we intend to study whether our targeted interventions have a lasting effect. Finally, the population studied included only lower-income and lower-education neighborhoods. For this reason, our results are applicable primarily to lower-income and less-educated Hispanic Americans.
We provide strong evidence that an aggressive, targeted outreach effort increases consent rates for organ donation. During the study period, a significant increase in consent rate was observed among the targeted Hispanic American population and was not evident in the population that was not Hispanic. Continued, similar efforts addressing the ongoing organ shortage crisis are warranted.
Accepted for Publication: April 10, 2014.
Corresponding Author: Ali Salim, MD, Division of Trauma, Burn, and Surgical Critical Care, Department of Surgery, Brigham and Women’s Hospital, 75 Francis St, Boston, MA 02115 (email@example.com).
Published Online: August 6, 2014. doi:10.1001/jamasurg.2014.1014.
Author Contributions: Dr Salim had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Study concept and design: Salim, Ley, Berry, Schulman, Chan.
Acquisition, analysis, or interpretation of data: Ley, Berry, Schulman, Navarro, Zheng, Chan.
Drafting of the manuscript: All authors.
Critical revision of the manuscript for important intellectual content: Berry, Schulman, Zheng, Chan.
Statistical analysis: Ley, Zheng, Chan.
Obtained funding: Salim, Chan.
Administrative, technical, or material support: Berry, Schulman, Navarro.
Study supervision: Salim, Ley.
Conflict of Interest Disclosures: None reported.
Funding/Support: This study was supported by grant 5RO1DK079667 from the National Institute of Diabetes and Digestive and Kidney Diseases (Dr Salim).
Role of the Sponsor: The National Institute of Diabetes and Digestive and Kidney Diseases had no role in the design and conduct of the study; collection, management, and analysis of the data; preparation, review, or approval of the manuscript; or the decision to submit the manuscript for publication.
Previous Presentation: The study was presented at the 85th annual meeting of the Pacific Coast Surgical Association; February 15, 2014; Dana Point, California.