Is Decedent Race an Independent Predictor of Organ Donor Consent or Merely a Surrogate Marker of Socioeconomic Status? : Transplantation

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Clinical and Translational Research

Is Decedent Race an Independent Predictor of Organ Donor Consent or Merely a Surrogate Marker of Socioeconomic Status?

DuBay, Derek1,8; Redden, David2; Haque, Akhlaque3; Gray, Stephen1; Fouad, Mona4; Siminoff, Laura5; Holt, Cheryl6; Kohler, Connie7; Eckhoff, Devin1

Author Information
Transplantation Journal 94(8):p 873-878, October 27, 2012. | DOI: 10.1097/TP.0b013e31826604d5
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Abstract

Consent rates for organ procurement from deceased donors vary across the United States. Several studies have been performed to identify barriers for organ donor consent. Certain demographics have consistently been associated with nondonation. African American race is one of the most significant prognostic variables associated with nondonation. Multiple studies have demonstrated that African American race is a strong predictor of nondonation (1–5). However, it is often and correctly argued that African American race is a crude explanatory variable that may be a surrogate marker of income, education, and access to health care (6–9). Studies suggest that the decreased socioeconomic status (SES) observed in African Americans compared with whites accounts for much of the observed racial disparities in health (10–12). However, even after adjustment for SES, there remains a clear decrease in access to medical care observed for African Americans compared with whites as evidenced by geographic residential segregation and a decrease in the delivery of a broad range of medical procedures (13–17). Therefore, it is not clear that African American race itself is an independent predictor of nondonation or merely a surrogate marker of SES and measures of access to health care. The impact of household income, education level, residence (urban vs. rural), and distance to donor hospital on deceased donor consent rates has not been fully evaluated. Our hypothesis is that lower household income, lower education level, rural residence, and longer distance to the donor hospital will be strong predictors of nondonation. Furthermore, we hypothesize that, when controlling for these SES variables and measures of access to health care, African American race will cease to be a significant predictor of organ donation.

RESULTS

Population Demographics

Compared with the general Alabama population, there were higher percentages of males and African Americans among potential donors whose families were approached for organ donation consent. Potential donors were also older than the general population and less likely to be married. Consent was obtained from 49% (637/1292) of the decedents’ families over the 4-year study period. Although 38% of the 4.7 million people living in the state of Alabama are registered organ donors (18), only 18% (229/1292) of the decedents who were approached for consent were registered organ donors (Table 1).

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TABLE 1:
Decedent demographicsa

The Effect of Socioeconomic Status on Organ Donation Consent

Household Income

Increasing household income was associated with consent for organ donation (Fig. 1). For every U.S. $10,000 increase in household income, the odds ratio (OR) of obtaining donor consent was 1.33 (95% confidence interval [CI], 1.19–1.48; P<0.001). Stratified by race, however, household income was a predictor of organ donor consent only in whites. There is a clear stepwise increase in organ donation as a function of increasing household income in whites, although a similar trend was not observed in African Americans (Fig. 1). Household income was higher in white families in which consent was obtained compared with decedents in which consent was not obtained (U.S. $35,305 vs. U.S. $33,058, P=0.001). In contrast, household income was not significantly different between African American families in which consent was obtained and those in which consent was not obtained (U.S. $25,147 vs. U.S. $26,137, P=0.90).

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FIGURE 1:
Increasing decedent’s household income was associated with consent for organ donation (P<0.001). Stratified by race, however, household income was a predictor of organ donor consent only in whites. There is a clear stepwise increase in organ donation as a function of increasing household income in whites, although a similar trend was not observed in African Americans.

Education

A similar number of potential donors were high school graduates (74.9% vs. 75.3%, P=0.28), but fewer potential donors had obtained a bachelor’s degree (12% vs. 19%, P<0.0001) compared with the general Alabama population (Table 1). Stratified by race, there was no significant difference in the proportion of African Americans compared with whites with a high school diploma (71.6% vs. 77.2%, P=0.06) or who had completed at least some college (26.9% vs. 32.1%, P=0.09).

Increased education was a significant predictor of organ donation. There was no significant difference between those decedents who had completed high school and those without a high school diploma, whereas the OR of organ donation for decedents who had completed some college compared with those without a high school diploma was 1.76 (95% CI, 1.31–2.37; P<0.001) (Fig. 2).

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FIGURE 2:
Increased education was a significant predictor of organ donation. There was no significant difference between those decedents who had completed high school and those without a high school diploma. Consent for organ donation was increased in decedents who had completed some college compared with those without a high school diploma (P<0.001). The association between increasing education and organ donor consent was similar in both African Americans and whites. Data are restricted to decedents at least 25 years old, consistent with the U.S. Census Bureau report (29).

Marital Status

The highest consent rates were observed in the never married (55.5%) and divorced (54.5%) groups, followed by the married group (45.5%), whereas the lowest consent rates were observed in the widowed group (35.9%). There was a negative relationship between married decedents and organ donor consent. Compared with decedents who were not married (including never married, widowed, and divorced), the OR of organ donor consent in married decedents was 0.75 (95% CI, 0.56–0.92; P=0.013). The negative association between married decedents and organ donor consent was similar between African Americans and whites.

The Effect of Urban Versus Rural Residence and Distance Between Decedent’s Residence and Donor Hospital on Organ Donation Consent

Urban Versus Rural Residence

Significantly fewer decedents whose families were approached for organ donation resided in a rural location (34.7% vs. 45.0%, P<0.0001) (Table 1). Organ donor consent was significantly increased in decedents with an urban residential home address compared with that in decedents with a rural residential home address (OR, 1.55; 95% CI, 1.16–2.08; P=0.0019) (Fig. 3). The association between urban residence and organ donation was similar between whites and African Americans. However, only 16.1% of African American decedents who were approached for organ donation consent had a rural address compared with 45.1% of whites.

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FIGURE 3:
Organ donor consent was significantly increased in decedents with an urban residential home address compared with that in decedents with a rural residential home address (P=0.0019). The association between urban residential home address and organ donor consent was similar in both whites and African Americans.

Distance Between Decedent’s Residence and Donor Hospital

Consent for organ donation was strongly correlated with the distance between the decedent’s home residence and donor hospital. The distance to the donor hospital was less than 100 mi in 143 decedents, between 100 and 200 mi for 771 decedents, and more than 200 mi in 279 decedents. For every 100-mi interval farther away from the donor hospital, the OR of donor consent was 0.59 (95% CI, 0.47–0.75; P<0.0001). The impact of distance between home address and donor hospital on organ donor consent was similar between African Americans and whites. However, African American decedents who were approached for organ donation were much more likely to live closer to the donor hospital (P<0.0001). For example, 15% of African Americans lived within 100 mi of the donor hospital compared with only 10% of whites. In contrast, only 15% of African Americans lived more than 200 mi from the donor hospital compared with 28% of whites.

Multivariable Analysis of Predictors of Decedent’s Organ Donor Consent

A multivariable analysis was performed to measure the strength of the effect of race on organ donation when controlling for SES, education, marital status, residence (urban vs. rural), and distance to donor hospital. The model also controlled for other decedent demographics and organ center practices that a previous work had demonstrated to be significantly associated with organ donor consent (19). White race, urban residence, education beyond high school, and shorter distance to hospital were significantly associated with organ donor consent on multivariable analysis (Table 2). Surprisingly, household income was not significant when controlling for other variables. Models examining income as a categorical predictor (quintiles and U.S. $10,000 increments) and a continuous variable, with no change in association, were developed.

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TABLE 2:
Univariate and multivariable analyses of socioeconomic factors and access to health care as predictors of donor consent

Effect of African American Race on Decedent’s Organ Donor Consent

On univariate analysis, the OR of donor consent in whites compared with that in African Americans was 2.76 (95% CI, 2.17–3.57; P<0.001). When controlling for SES and access to health care variables, the OR of donor consent in whites compared with that in African Americans increased to 4.36 (95% CI, 2.88–6.61; P<0.001) (Table 2).

DISCUSSION

There have been nationally sponsored, large-scale efforts to disseminate “best practice” organ donor approaches to decedents and their families, which have manifested in significant increases in donor consent and recovered organs in the past decade (20). Unfortunately, organ donation recently has peaked in the United States and even slightly decreased in the past 2 years (21). Examination of nationally available organ procurement data suggests that organ donation goals are being met in most white decedents, but a large disparity in organ donation exists in African American decedents (21). One of the largest sources of unrealized potential organ donors is African American decedents.

Large qualitative research efforts have investigated the underlying reasons for why African American race is associated with nondonation (22). Certain attitudes and beliefs are prevalent among African Americans who are unwilling to donate organs. A cultural mistrust of the medical system has been demonstrated to be a dominant nondonation attitude (5, 23, 24) especially in older African Americans (25). Central to this concern is a fear that physicians will not do all that they can to save the life of those identified as potential organ donors (23, 26, 27). Other common beliefs impacting donation is that organ allocation is unfair (4, 27) and that there is a black market for organ donation (4). Such attitudes and beliefs may be strongly influenced in African Americans living in the south with knowledge of the Tuskegee Syphilis Study, arguably the most infamous biomedical research study in U.S. history (28).

Although African American race is statistically a strong predictor of nondonation (1–5), it is also a well-established predictor of lower SES and poorer access to health care (6–17). We hypothesized that, when controlling for SES and access to health care, decedent African American race would fail to be a significant predictor of organ donation. Much to our surprise, the data seem to suggest exactly the opposite. SES and access to health care variables were actually masking the magnitude of the effect of decedent race on organ donor consent. When controlling for SES and access to health care, the OR of donor consent in whites compared with that of African Americans increased from 2.76 to 4.36. Our multivariable model (Table 2) demonstrates that decedent race was the most highly weighted variable. This observation is partially explained by African Americans being more likely to have an urban residence address and live closer to the donor hospital compared with whites. However, there remains unknown but important factor(s) associated with both African American race and obtaining organ donor consent. Contrary to our hypothesis, this factor does not seem to be household income, marital status, education level, or disparities in health care access. Perhaps most surprising is the nearly identical household income in African American donors (U.S. $25,147) and nondonors (U.S. $26,137). The association between increasing household income and donor consent was observed only in whites (Fig. 1). One interesting phenomenon observed in the lowest income quintile group of whites was a higher donation rate than in the next two quintile groups (Fig. 1). Unfortunately, this study does not provide insights as to why this is the case, although this interesting phenomenon deserves further study.

As with all retrospective database studies, this investigation has limitations. First, the study population consists of decedents who died in Alabama, and there were no significant number of Hispanics or Asians for analysis. Second, only 4% of the decedents’ families were approached by an African American requesting consent, limiting the ability to measure the effect of requestor race on donor consent. Third, SES was calculated from the U.S. census tract data and is limited by the data collection practices and assumptions used by the U.S. Census Bureau (29). Fourth, some of the variables considered may be statistically similar such as shorter distance to donor hospital and urban residence. Finally, obtaining organ donor consent from the decedent’s family is a complex multistep psychosocial process; the experiences, attitudes, and decisions made by the families represented in this study may or may not be generalizable.

In conclusion, certain decedent SES factors and measures of access to health care variables are significantly associated with organ donor consent. Controlling for statistically significant SES and access to health care variables markedly increased the strength of the effect of race on organ donor consent. We interpret this result to indicate that there remains unknown but important factor(s) associated with both race and obtaining consent, and further studies are required to isolate and determine whether this factor(s) is modifiable.

MATERIALS AND METHODS

Study Population

Consistent with the referral practices of The Routine Death Notification Legislation (42 CFR Part 482) (30), hospitals that receive Medicare funding are mandated to notify the designated organ procurement organization of every death or imminent death. Organ donor referral data were obtained from the Alabama Organ Center electronic database. Ethics approval for this study was obtained from the University of Alabama institutional review board protocol #N100301001.

Between January 1, 2006, and December 31, 2009, the Alabama Organ Center received 3423 notifications. After a standardized telephone screening by an organ procurement specialist, a decision to request consent for organ donation from families of 1292 decedents (38%), who form the study population, was made. The reasons for not approaching the families of the remaining 2131 decedents for consent were that the potential candidate was not brain dead (including those failing to satisfy locally established guidelines for donation after cardiac arrest opportunities) (32%), sepsis or multisystem organ failure (15%), medical concerns (14%), malignancy (13%), advanced age (10%), decedent’s death before referral process (4%), communication difficulties with referring hospital (4%), and others (8%). During this study period, the Alabama Organ Center did not practice first-person consent. A written consent was required from the decedent’s family in all cases.

Methodology

We examined the following measures of SES and access to health care: household income, urban versus rural residence as defined by the Alabama Rural Health Association (31), education, and distance to donor hospital. Death certificates were obtained from the Alabama Department of Public Health records (32) for the 1292 decedents for whom familial consent was requested. Specific data obtained include the decedent’s home address, education level, marital status, cause of death, and the hospital in which the patient was pronounced dead. Using the decedent’s residence address and U.S. census data (29), the median household income for the census block containing the decedent’s address was determined. Finally, the distance between the decedent’s home residence and death hospital was calculated.

Statistical Analysis

The dependent variable of interest in this study was familial consent for organ donation, as identified in the Alabama Organ Center electronic organ donor database. In addition to decedent race, independent variables examined in this study include household income, residence (urban vs. rural), educational level, and distance to the donor hospital. Examination of the data began by examining measures of central tendency (sample mean and median) and measures of dispersion (variance and standard deviations). The primary outcome variable, obtaining familial consent for organ donation, is dichotomous, and therefore, the analytic approaches focused on both Pearson chi-square analyses and logistic regression. Crude unadjusted ORs were initially calculated for each variable and compared between whites and African Americans. To identify the most parsimonious model that could explain the variation in the log odds of obtaining consent, multivariable logistic regression models were constructed. Measure of association is summarized with ORs with corresponding 95% CIs. For all inferences, the probability of a Type I error (α) was set to 0.05. All analyses were conducted using SAS 9.2 (SAS Institute, Inc., Cary, NC).

ACKNOWLEDGMENT

The authors thank Walt Montgomery from the Alabama Organ Center for donor data retrieval.

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    Keywords:

    Socioeconomic status; Organ donation; Education; Health care; African American

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