Salim A, Schulman D, Ley EJ, Berry C, Navarro S, Chan LS. Contributing Factors for the Willingness to Donate Organs in the Hispanic American Population. Arch Surg. 2010;145(7):684-689. doi:10.1001/archsurg.2010.110
To identify factors that contribute to intent to donate organs in Hispanic American individuals.
Cross-sectional telephone surveys.
Four southern California neighborhoods with a high percentage of Hispanic American individuals.
Respondents 18 years or older were drawn randomly from lists of Hispanic surnames.
Main Outcome Measures
Telephone surveys were conducted that measured demographic and socioeconomic factors, cultural factors, awareness and knowledge, and perception and belief regarding organ donation, as well as the intent to become an organ donor. Logistic regression was performed to identify independent contributing factors to intent to register for organ donation.
Five hundred twenty-four telephone surveys were conducted over a 3-week period. Seventy-three percent of those surveyed were between the ages of 18 and 44 years and the sample was equally divided between men and women. The following independent risk factors contributed to intent to register: low acculturation (adjusted odds ratio [AOR], 0.39; 95% confidence interval [CI], 0.24-0.62; P < .001), religion (AOR, 0.33; 95% CI, 0.17-0.60; P < .001), perception that the wealthy are more likely to receive organs (AOR, 0.41; 95% CI, 0.25-0.65; P = .001), belief that donation disfigures the body and impacts the funeral (AOR, 0.45; 95% CI, 0.22-0.89; P = .02), and family influence (AOR, 2.02; 95% CI, 1.28-3.22; P = .004).
Among Hispanic American individuals, low acculturation, religion, belief, and family influence affect the intent to register for organ donation. To improve organ donation, these risk factors should be considered using specific, effective educational programs.
Because of a number of medical advances, transplantation has become a preferred treatment for end-stage solid organ failure. The growing demand for organs continues to outpace supply, such that the organ shortage is a public health crisis. In 2008, 27 963 transplants were performed from 14 000 donors.1 Unfortunately, with more than 104 000 people listed, awaiting organs, more than 7000 patients die every year before receiving their organs.1 This discrepancy is most pronounced in minority populations, who compose more than 40% of the entire organ waiting list.2
Hispanic American individuals represent a unique minority in that their population growth outpaces that of all other ethnic groups.3 Hispanic American individuals accounted for nearly half of the national population growth between 2000 and 20043 and it is estimated that they will constitute one-third of the American population by the end of this century.4 As expected, this population growth parallels a growth in transplant organ need. Over the past decade, the number of Hispanic American individuals added to this organ waiting list has increased by more than 260% while the list involving non-Hispanic individuals has grown by 146%.4 Despite this growth, Hispanic American individuals are still 60% less likely to donate their organs than non-Hispanic white individauls.4
There is a paucity of literature to explain why Hispanic American individuals are less willing to become organ donors.5 As a result, many studies were forced to extrapolate from the successful approach used to increase organ procurement in African American individuals.6- 8 The purpose of this study was to identify unique factors associated with a willingness to donate organs in Hispanic American communities in southern California. This study will serve as a basis for interventions that are designed to increase the organ donation rate in Hispanic American individuals.
This research is part of an ongoing project sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases (grant 5RO1DK079667) to help increase organ donation rates in Hispanic American communities in the county of Los Angeles. This study was approved by the institutional review board of the Cedars-Sinai Medical Center.
Four southern California neighborhoods with high percentages of Hispanic American individuals residing close to a major metropolitan level I trauma center that provides the majority of their care were identified using US census data.9 Three of the neighborhoods are study communities where future interventions will be implemented, and 1 neighborhood serves as the control community where future interventions will not be implemented. The current study reports the findings of the cross-sectional survey in the 4 neighborhoods conducted in October 2008 prior to the start of any programs or interventions.
The cross-sectional survey (validated by the local organ procurement organization OneLegacy) was designed to measure various factors found to affect organ donation. The specific variables and their corresponding domains are listed in Table 1. With the exception of the level of acculturation, each data element was derived from the direct answer to a question in the survey. The level of acculturation is a composite indicator using the respondent's generation, percentage of life in the United States, and language preference.
The survey began with 6 demographic questions designed to confirm that the respondents lived in the target zip codes, were Hispanic American individuals, and were older than 18 years. The survey included 21 questions targeting the participant's thoughts about organ donation. Questions were asked to ascertain the person's awareness, beliefs, and attitudes about organ donation. Most of these were multiple-choice questions, but some were left open ended. After the series of questions about organ donation, the participant was then asked basic demographic information. This included 13 questions about education, income, religion, employment, and other demographic data.
Respondents were drawn randomly from lists of Hispanic surnames in the 4 target zip codes. Lists of telephone numbers were purchased from a number registry (SDR Sampling Services). Numbers were then assigned to a calling center by computer randomization. The sample was stratified by zip code so that about one-quarter of the sample came from each of the 4 areas called. Respondents were qualified as self-identified Hispanic American individuals, 18 years or older, who claimed to be one of the heads of their households. The sample included foreign- and US-born Hispanic American individuals and various levels of acculturation.
The survey was conducted over a 3-week period in October 2008 by professionally trained interviewers. Data were collected and coded into a database for each respondent. There were multiple points of termination for participants who did not fulfill the study requirements. Data were collected and coded by technicians blinded to the purpose of this study.
The main outcome measure for this study was the respondent's intent to register to become an organ donor. We defined intent to register as those who answered “already registered” or “very likely to register” to the question “How likely are you to register to become an organ donor?” The contributing factors included demographic and social economic factors, cultural factors, awareness and knowledge, perception, and belief regarding organ donation. Table 1 provides a list of the data elements considered in this study for each domain.
Univariate analysis was performed to identify the differences of each contributing factor between the “intent to register” and the “no intent to register” groups. The 2-sided Fisher exact test was used to analyze categorical factors and the Mann-Whitney rank sum test was used to analyze continuous factors. For all factors, the unadjusted odds ratio for intent to register, with 95% confidence intervals, was derived. Factors with a P value <.20 from the univariate analysis were selected into the stepwise logistic regression model to identify independent contributing factors to intent to register for organ donation. Adjusted odds ratios and their 95% confidence intervals were derived for the significant factors entered in the model.
A sample size of 500 was predetermined to provide us with a 95% confidence interval estimate of at most 5% width for each attitude toward organ donation. This estimation was based on the assumption that each attitude or response was measured as a dichotomous or categorical variable and that the attitudes varied from 10% to 90%. All statistical analysis was performed using SAS Systems for Windows, version 9.1.3 (SAS Institute Inc, Cary, North Carolina).
There were a total of 524 telephone interviews by professionally trained interviewers. Seventy-three percent of the population was between the ages of 18 and 44 years, and 39% were male. Of these respondents, 31% (163) expressed intent to register and 69% (361), no intent to register. A comparison of all contributing factors between the “intent to register” and the “no intent to register” respondents is shown in Table 2. As demonstrated, there was no significant difference in age, sex, income, place of residence (zip code), any of the perception factors, unwillingness to donate to a stranger, and belief that organ donation is cruel, whereas a difference was seen in all other contributing factors between those who expressed a positive or negative intent to register.
Table 3 demonstrates the odds ratio for intent to register for each factor and its 95% confidence interval. Significant differences in the willingness to donate include higher educational level (high school or less), employment, high or medium acculturation, family influence, no religious influence, awareness of organ donation program, awareness of driver license registry, belief that organ donation helps people, and belief that it is a social responsibility.
From the univariate analysis (Table 3), 15 factors with P < .20 were entered into the stepwise logistic regression model to identify independent contributing factors. A total of 350 respondents with complete answers to all questions were included in the analysis. Six factors were entered as significant (P < .05) independent contributing factors to intent to register. The results are shown in Table 4. Low acculturation, religion, belief that organ donation will disfigure the body and impact the funeral, and perception that wealthy people are likely to receive organ transplants were independent negative factors for intent to register and family influence and awareness of driver license registry were independent positive factors for intent to register. These 6 factors explained 26% of the difference between the “intent to register” and the “no intent to register” respondents.
In the present study, we set out to identify factors that contribute to the willingness to donate organs in the Hispanic American community. These factors could then be addressed in future interventions to help increase consent rates in this minority population. We found that only 31% of the population expressed willingness to become an organ donor. This is far below the 46% intent to register seen in other Hispanic American communities, reinforcing the notion that Hispanic American individuals are not a homogeneous group and different communities may require different interventions.10 We found that independent contributing factors for the intent to become an organ donor included low acculturation, religion, belief that organ donation will disfigure the body and impact the funeral, perception that wealthy people are likely to receive organ transplants, family influence, and awareness of driver license registry. With the exception of acculturation level, these independent factors can easily be targeted in future campaigns aimed at improving organ donation rates in the Hispanic American community.
While the Hispanic American population is growing rapidly, a disproportionate amount of Hispanic American individuals are on the organ donation waiting list. Although only 16% of the waiting list participants are Hispanic American, this percentage will increase based on current growth rate and disease patterns. Of approximately 35 million Hispanic individuals in America, 1.2 million are diabetic—the leading cause of kidney failure—and Hispanic American individuals are at increased risk for diabetic complications such as pancreas and kidney failure.10 When compared with the general population, Hispanic American individuals have higher rates of obesity, non–insulin-dependent diabetes mellitus, and end-stage renal disease.10 For these reasons, dramatic increases in organ need are not at all surprising. Over the past decade, the need for transplanted kidneys increased by 197% and the need for kidney-pancreas transplants increased by 791% in Hispanic American individuals; the corresponding increases in non-Hispanic white individuals were 116% and 184%, respectively.10 There is clearly an increasing need for transplantable organs in the Hispanic American community. Although the consent rates among Hispanic American individuals are improving, they still are 60% less likely to donate compared with non-Hispanic white individuals.3
Interestingly, very little is known about why Hispanic American individuals are less likely to donate compared with non-Hispanic white individuals. In fact, much assumed about Hispanic American donation rates is extrapolated from African American individuals. Similarities exist in both minority groups, such as distrust of the medical system and misconceptions concerning religion; however, there are other critical issues specific to the Hispanic American community. Important issues identified to affect organ donation rates in Hispanic American individuals include language barrier, involvement of the extended family in decision making, lack of knowledge and/or misconceptions concerning organ donation, religious beliefs and/or cultural viewpoints, and failures of health care professionals to communicate effectively.3,5,11- 15 Also unique to Hispanic American individuals, they are a highly mobile population, with a constant influx of newcomers both from other communities within the United States and their country of origin.3 This makes promoting organ donation within the Hispanic community a challenging endeavor.
One of the few studies to examine risk factors for organ donation in Hispanic American individuals in Arizona found that family discussions about organ donation and knowing someone willing to be a donor were significant predictors for the willingness to be an organ donor.11 Similarly, we found that family influence was important and, when present, a participant was 2 times as likely to be an organ donor. The goal of this study was to help identify factors that could later be addressed to improve donation rates. These factors included myths and awareness such as the belief that organ donation will disfigure the body and impact the funeral, the perception that wealthy people are more likely to receive organ transplant, and the awareness of the driver license registry. These beliefs may easily be improved through education. Participants who had a religious influence in their lives were least likely to support organ donation. For this reason, we propose talks and education about organ donation at Hispanic American churches in the target areas. The last factor that influenced our participants was low acculturation. Unfortunately, low acculturation is difficult to control. One target is to educate recent immigrants about donation. The next step is to impact not only the attitudes and beliefs about donation, but also increase the number of Hispanic American individuals who sign up to be organ donors.
There were a number of limitations to the study. The data are derived from cross-sectional surveys, so conclusions that can be made are limited. While the telephone interviews were random, most of the telephone interviews were done during the day, which led to a paucity of men aged 18 to 30 years answering our survey. To adjust for this, we had to slightly weight the responses by this group. We also did not adjust for income. The zip codes used for this study (90031, 90201, and 90011) are all in lower-income and lower-education neighborhoods. For this reason, our results are applicable only to lower-income and less highly educated Hispanic American individuals. Limitations aside, to our knowledge, this is the first study to examine predictors of donation in Hispanic American individuals in California and may serve as a template for increasing the willingness to donate in this population.
In the current study, only 31% of respondents noted a willingness to become organ donors. We found that low acculturation, religion, and belief in inequitable distribution and possible body disfigurement reduced the intent to register for organ donation, while family influence and the awareness of a driver license registry increased this intent. To improve organ donation, these risk factors will be specifically addressed using effective educational programs.
Correspondence: Ali Salim, MD, Cedars-Sinai Medical Center, Department of Surgery, 8700 Beverly Blvd, Ste 8215N, Los Angeles, CA 90048 (email@example.com).
Accepted for Publication: January 25, 2010.
Author Contributions:Study concept and design: Salim. Acquisition of data: Schulman and Navarro. Analysis and interpretation of data: Salim, Ley, Berry, and Chan. Drafting of the manuscript: Salim and Ley. Critical revision of the manuscript for important intellectual content: Salim, Schulman, Ley, Berry, Navarro, and Chan. Statistical analysis: Ley and Chan. Obtained funding: Salim. Administrative, technical, and material support: Schulman and Navarro. Study supervision: Ley.
Financial Disclosure: None reported.
Funding/Support: This work was supported by National Institute of Diabetes and Digestive and Kidney Diseases grant 5RO1DK079667
Previous Presentation: This paper was presented at the 117th Sciencific Session of the Western Surgical Association; November 10, 2009; San Antonio, Texas; and is published after peer review and revision. The discussions that follow this article are based on the originally submitted manuscript and not the revised manuscript.
John Brems, MD, Maywood, Illinois: As we are all aware, the success of organ transplantation has far outstripped the number of donor organs available for transplantation. As the authors have stated, one of the largest-growing population groups in the United States is the Hispanic Americans. It is estimated that Hispanic Americans will constitute one-third of the American population by the end of this century. Therefore, the authors have attempted to elucidate contributing factors for the willingness of Hispanic Americans to donate organs. Through telephone surveys, they have been able to identify several factors which have had a negative influence on Hispanic Americans to organ donation. In addition, they have found 2 factors which have had a positive influence on this population group.
This is a very important topic and gives us some insight into contributing factors for organ donation by a large minority population. The study is hampered since it is a telephone survey. However, the information is a good starting place for trying to improve organ donation in this population. I have 3 questions for the authors.
The first is were the telephone surveyors able to speak to the respondents in Spanish or was it done in English?
Next, there was a tremendous amount of debate going on in October 2008 about health care reform and the concern about illegal immigrants adding to the health care cost in this country. Therefore, is there any way of knowing from this survey how many of the respondents were illegal immigrants in this country? This may have a strong impact on how they responded to the questions.
Last, this survey was done in a low–social economic area of Los Angeles [California]. Therefore, many of the respondents in this survey were probably unemployed and of a low social economic class. They may not have understood the questions that were being asked. Too, their attitudes may be different from Hispanic Americans who live in a middle-class neighborhood. I was wondering if the authors gave any consideration to picking other neighborhoods in Los Angeles, as opposed to the neighborhoods they picked. There may be more positive opinions about organ donation in a higher–social economic neighborhood as opposed to the neighborhoods they picked. Can you explain why you chose these poor neighborhoods to perform the survey?
Dr Salim: In regards to your first question on whether the interviewers actually spoke Spanish, yes, they did. The interviews were performed by a professional service that specialized in performing surveys in Hispanic American populations. So, language barrier was not a problem for this study.
With respect to the question about illegal immigrants, that was not one of the questions we asked so we really had no way of knowing the respondents' immigration status. However, we did measure the level of acculturation, which took into account the amount of time respondents were in the United States. I guess you can make some assumptions based on their level of the acculturation.
In terms of why we chose the neighborhoods that we did: in designing the main study, one of the main outcome measures was donation rates, ie, consent and conversion rates, at one of the main hospitals that provides care for Hispanic Americans in Los Angeles. We had to make sure that the neighborhoods we selected for interventions were in close proximity to this hospital in order to assess the usefulness of these interventions. We understand that these neighborhoods are mostly lower social economic, unemployed, and uneducated, so the results are only applicable to these populations. However, there has been very little progress in terms of increasing donation rates in these populations and our results provide some very useful information.