Organ Donation in the United States: The Tale of the African-American Journey of Moving From the Bottom to the Top.

OBJECTIVE: The purpose was to review the increase of minority organ donation. METHODS: The methodology was based on the efforts of the DC Organ Donor Program and the Dow Take Initiative Program that focused on increasing donors among African Americans (AAs). From 1982 to 1988, AA donor card signings increased from 20/month to 750/month, and Black donations doubled. A review of the data, including face-to-face grassroots presentations combined with national media, was conducted. Gallup polls in 1985 and 1990 indicated a tripling of black awareness of transplantation and the number of blacks signing donor cards. Based on the applied successful methodologies, in 1991, the National Minority Organ Tissues Transplant Education Program was established targeting AA, Hispanic, Asian, and other ethnic groups. A review of the United Network for Organ Sharing (UNOS) database from 1990 to 2010 was accomplished. RESULTS: Nationally, ethnic minority organ donors per million (ODM) increased from 8-10 ODM (1982) to 35 ODM (AA and Latino/Hispanics) in 2002. In 1995, ODMs were white 34.2, black 33.1, Hispanic 31.5, and Asian 17.9. In 2010, Black organ donors per million totaled 35.36 versus white 27.07, Hispanic 25.59, and Asian 14.70. CONCLUSIONS: Based on the data retrieved from UNOS in 2010, blacks were ranked above whites and other ethnic minority populations as the number one ethnic group of organ donors per million in the US.

Blacks as donors for transplantation: suboptimal outcomes overcome by transplantation into other minorities.

BACKGROUND: In 1977, Opelz et al (Transplant Proc 9:137, 1977) introduced research that identified ethnic disparities in the relative risk of graft loss when African American donors or recipients were targeted. Current research from the Organ Procurement and Transplantation Network (OPTN) reveals a continuation of these trends. While 1-year graft survival rates for a kidney are 92.1% for Caucasians, 94.1% for Asians, and 92.9% for Latinos, the comparative rate is 88.9% for African Americans. This study extends research on health disparities by examining relative differences in graft and patient survival rates when the organ donors are African American. A number of factors have been introduced as possible determinants of disparate outcomes by ethnicity in terms of graft survival rates. This descriptive study was designed to test the hypothesis: There are no differences in the relative risks associated with graft survival rates and mortality based upon differences in the ethnicity of the donors. MATERIALS AND METHODS: Data were obtained from the OPTN/United Network for Organ Sharing (UNOS) Registry from April 1, 1994 to December 31, 2000. A total of 118,769 transplants were analyzed, including 77,689 living and deceased donor kidney transplants, 26,124 deceased donor liver transplants, and 14,956 deceased donor heart transplants. A multivariate Cox regression model was used to determine the relative risk of graft loss and cardiac transplant mortality for different ethnicities when the organ donors were African American. RESULTS: The study found that the relative risk of kidney graft loss was 21.3% (P < .01) higher between African American donors and Caucasian recipients than between Caucasian donors and other recipients. With liver transplants, the use of an African American donor increased the risk of graft loss by 21.5% (P < .001). When African American donors gave kidneys and livers to other African Americans, the relative risks of kidney graft loss were 50.9% higher for a kidney (P < .001) and 36.6% higher for a liver (P < .001) if both the donors and recipients were African American. The relative risk of mortality was 51.3% higher (P < .001) when African American hearts were transplanted into other African Americans. No significant differences existed in terms of the relative risk of cardiac mortality (P < .29) when African American hearts were transplanted into Caucasian recipients. When African American donors provided kidneys and livers to Latinos and Asians, the relative risk of graft loss fell below the rates for Caucasian donors and recipients. However, the differences were not statistically significant. CONCLUSIONS: Our data have identified a pressing need to conduct clinical and prospective research that can isolate the causes of these suboptimal outcomes. This is particularly important since the number of African American organ donors has escalated as a result of recent health outreach and education efforts.

Principles of patient safety in pediatrics.

The American Academy of Pediatrics and its members are committed to improving the health care system to provide the best and safest health care for infants, children, adolescents, and young adults. In response to a 1999 Institute of Medicine report on building a safer health system, a set of principles was established to guide the profession in designing a health care system that maximizes quality of care and minimizes medical errors through identification and resolution. This set of principles provides direction on setting up processes to identify and learn from errors, developing performance standards and expectations for safety, and promoting leadership and knowledge.

A national minority organ/tissue transplant education program: the first step in the evolution of a national minority strategy and minority transplant equity in the USA.

1. These successful education programs initially aimed at the AA community are being expanded into other minority groups such as Native American (Alaskan and American Indian), Hispanic (Latino), and Asian-Pacific Islander populations; and if the same modus operandus, ie, a minority-targeted message delivered by ethnically and culturally similar and sensitive messengers is used, this will have equal applicability to the majority population. MOTTEP, the first grass roots national transplant education program, while directed first to the minority population, can when presented to the majority population help all groups address the number one problem in transplantation today--the shortage of donors. 2. Active inclusion and involvement of minorities at all levels of problem resolution (resource allocation, research, and education), emphasizing community participation, education, and empowerment are the important next steps to allow for minority transplant equity in America. 3. The emergence of ASMHTP as the responsible brain trust for future minority-related efforts along with MOTTEP, a community based, empowering transplant education program, highlights the importance of a national strategy necessary for the survival of minority communities. This will enhance the interaction between minority transplant health professionals and the minority community and requires minority inclusion at all decision making levels of problem resolution within the transplant community.

IS: the neural nexus. Why you should consider information systems as the central nervous system of an integrated healthcare network.

Until now, utilization of information systems in America's healthcare industry has been anything but scientific. And individual healthcare providers have managed to deliver the world's best healthcare services despite lousy information systems, lack of clinical outcomes data, lack of adequate service costing data and lack of customer satisfaction data. The key to the scientific improvement of the health status of a community health network is the acquisition and application of knowledge, which we believe to be wholly dependent upon scientifically designed clinical information systems. We've got some work to do.

New multiple congenital anomalies/mental retardation syndrome with cardio-facio-cutaneous involvement--the CFC syndrome.

Eight patients (4 males, 4 females) were affected with a previously undefined multiple congenital anomalies/mental retardation syndrome which was designated the Cardio-Facio-Cutaneous (CFC) syndrome and which includes congenital heart defects, characteristic facial appearance, ectodermal abnormalities, and growth failure. Cardiac defects were variable, the most common being pulmonic stenosis and atrial septal defect. Typical facial characteristics were high forehead with bitemporal constriction, hypoplasia of supraorbital ridges, antimongoloid slant of palpebral fissures, depressed bridge of nose, and posteriorly angulated ears with prominent helices. The hair was usually sparse and friable. Skin changes varied from patchy hyperkeratosis to a severe generalized ichthyosis-like condition. All cases were sporadic in occurrence, there was no family history of consanguinity, and chromosomes were normal. Although presumed to be genetic, the cause of the CFC syndrome remains unknown.

Sensorineural deafness in the FG syndrome: report on four new cases.

We report on four new cases of FG syndrome with typical manifestations of this X-linked inherited condition and note a hitherto undescribed sign, sensorineural deafness. The association between sensorineural deafness and imperforate anus is likely to represent more than a chance occurrence, given its presence also in the Townes-Brocks syndrome.