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Disqualifying patients with intellectual disabilities (ID) from transplantation has received growing attention from the media, state legislatures, the Office of Civil Rights, and recently the National Council on Disability, as well as internationally. Compared with evidence-based criteria used to determine transplant eligibility, the ID criterion remains controversial because of its potential to be discriminatory, subjective, and because its relationship to outcomes is uncertain. Use of ID in determining transplant candidacy may stem partly from perceived worse adherence and outcomes for patients with ID, fear of penalties to transplant centers for poor outcomes, and stigma surrounding the quality of life for people with ID. However, using ID as a contraindication to solid organ transplantation is not evidence-based and reduces equitable access to transplantation, disadvantaging an already vulnerable population. Variability and lack of transparency in referral and evaluation allows for gatekeeping, threatens patient autonomy, limits access to lifesaving treatment, and may be seen as unfair. We examine the benefits and harms of using ID as a transplant eligibility criterion, review current clinical evidence and ethical considerations, and make recommendations for transplant teams and regulatory agencies to ensure fair access to transplant for individuals with ID., (© 2019 The American Society of Transplantation and the American Society of Transplant Surgeons.)

Purpose: The increasing attention paid to community-based research highlights the question of whether human research protections focused on the individual are adequate to safeguard communities. We conducted a study to explore how community members perceive low-risk health research, the adequacy of human research protection processes, and the ethical conduct of community-based research., Methods: Eighteen focus groups were conducted among rural and urban Hispanic and Native American communities in New Mexico using a semistructured guide. Group transcriptions were analyzed using iterative readings and coding, with review of the analytic summary by group members., Results: Although participants recognized the value of health research, many also identified several adverse effects of research in their communities, including social (community and individual labeling, stigmatization, and discrimination) and economic (community job losses, increased insurance rates, and loss of community income). A lack of community beneficence was emphasized by participants who spoke of researchers who fail to communicate results adequately or assist with follow-through. Many group members did not believe current human research and data privacy processes were adequate to protect or assist communities., Conclusions: Ethical review of community-based health research should apply the Belmont principles to communities. Researchers should adopt additional approaches to community-based research by engaging communities as active partners throughout the research process, focusing on community priorities, and taking extra precautions to assure individual and community privacy. Plans for meaningful dissemination of results to communities should be part of the research design.

Objectives: We examined disparities in perinatal care, birth outcomes, and infant health between rural American Indian and Alaska Native (AIAN) persons and rural Whites over time., Methods: We compared perinatal and infant health measures for 217 064 rural AIAN births and 5 032 533 rural non-Hispanic White births., Results: Among American Indians and Alaska Natives, unadjusted rates of inadequate prenatal care (1985-1987, 36.3%; 1995-1997, 26.3%) and postneonatal death (1985-1987, 7.1 per 1000; 1995-1997, 4.8 per 1000) improved significantly. However, disparities between American Indians and Alaska Natives and Whites in adjusted odds ratios (AORs) of postneonatal death (1985-1987, AOR = 1.55; 95% confidence interval [CI] = 1.41, 1.71; 1995-1997, AOR = 1.46; 95% CI = 1.31, 1.64) and adjusted risk ratios (ARRs) of inadequate prenatal care (1985-1987, ARR = 1.67; 95% CI = 1.65, 1.69; 1995-1997, ARR = 1.84; 95% CI = 1.81, 1.87) persisted., Conclusions: Despite significant decreases in inadequate prenatal care and postneonatal death among American Indians and Alaska Natives, additional measures are needed to close persistent health gaps for this group.

Objectives: We sought to provide a national profile of rural and urban American Indian/Alaska Native (AI/AN) maternal and infant health., Methods: In this cross-sectional study of all 1989-1991 singleton AI/AN births to US residents, we compared receipt of an inadequate pattern of prenatal care, low birthweight (< 2500 g), infant mortality, and cause of death for US rural and urban AI/AN and non-AI/AN populations., Results: Receipt of an inadequate pattern of prenatal care was significantly higher for rural than for urban mothers of AI/AN infants (18.1% vs 14.4%, P

The practicality and moral value of community review of human genetic research has become a focus of debate. Examples from two Native American communities are used to address four aspects of that debate: (1) the value of community review in larger, geographically dispersed populations; (2) the identification of culturally specific risks; (3) the potential conflict between individual and group assessments of research-related risks; and (4) the confusion of social categories with biological categories. Our experiences working with these two communities suggest that: (1) successful community review may require the involvement of private social units (e.g., families); (2) culturally specific implications of genetic research may be identifiable only by community members and are of valid concern in their moral universes; (3) community concerns can be incorporated into existing review mechanisms without necessarily giving communities the power to veto research proposals; and (4) the conflation of social and biological categories presents recruitment problems for genetic studies. These conclusions argue for the use of community review to identify and minimize research-related risks posed by genetic studies. Community review also can assist in facilitating participant recruitment and retention, as well as in developing partnerships between researchers and communities.

Objectives: This study uses Indian Health Service inpatient data to estimate cancer incidence among American Indians and Alaska Natives., Methods: Hospital discharge data for 1980 through 1987 were used to identify cases of cancer for 21 sites in women and 18 sites in men. Estimates of incidence were directly standardized to data from the Surveillance, Epidemiology, and End Results Program for the same time frame., Results: Cancers of the gallbladder, kidney, stomach, and cervix show generally high rates among many American Indian and Alaska Native communities, and cancers of the liver and nasopharynx are high in Alaska. Of the relatively common cancers in Whites, American Indians and Alaska Natives experience lower rates for cancers of the breast, uterus, ovaries, prostate, lung, colon, rectum, and urinary bladder and for leukemia and melanoma. Variation among geographic areas and among tribal groups is observed for many important cancer sites., Conclusions: This study demonstrates significant variations of cancer rates among American Indians and Alaska Natives, with important implications for Indian Health Service cancer control programs. The study also supports the potential use of hospital discharge data for estimating chronic disease among diverse American Indian and Alaska Native communities.

Background: The initial diagnosis of intracranial tumor, subarachnoid hemorrhage (SAH), and subdural hematoma (SDH) can be difficult. This study was undertaken to determine the incidence and presenting signs and symptoms of these disorders in primary care settings, and to determine whether a more aggressive investigative strategy for patients with headache is justifiable., Methods: Weekly return cards and a chart audit were used to collect data over a 19-month period on every patient who had a new diagnosis of intracranial tumor, SAH, or SDH. Age and sex reports were collected annually., Results: Twenty-five new tumors, 17 SAHs, and 8 SDHs were reported in 58 practices (a rate of 12/100,000 patients per year). Only one half of these patients had headaches, and no abnormalities were found on neurological examination of many. Diagnosis was delayed in only four patients with headache caused by a brain tumor and in three patients with SAHs. Diagnosis was delayed in two of the latter because of false-negative CT scans., Conclusions: Although clinical findings and CT scans are not reliable indicators, clinicians are able to detect the majority of these rare conditions without undue delay by selecting a small subset of patients for further investigation. More extensive use of CT scans appears to be a weak strategy to improve detection of these serious disorders, as increased use would lead to increased health care costs and unintended adverse effects, and provide little benefit.

Background: Clinicians in the Ambulatory Sentinel Practice Network (ASPN) order computed tomography (CT) scans for approximately 3% of patients with headache. This study was undertaken to provide information about the reasons for ordering CT scans and the results obtained., Methods: Weekly return cards were used to collect data on every patient for whom a CT scan was ordered to investigate a headache during a 19-month period. Copies of CT reports were reviewed, and a chart audit was performed to collect further clinical information whenever an intracranial tumor, subarachnoid hemorrhage (SAH), or subdural hematoma (SDH) was reported., Results: Clinicians in 58 practices ordered 349 CT scans. Only 52 patients (15%) had abnormalities noted on neurological examination. Most CT scans were ordered because the clinician believed that a tumor (49%) or an SAH (9%) might be present. Fifty-nine (17%) were ordered because of patient expectation or medicolegal concerns. Of the 293 reports reviewed, 14 indicated that a tumor, an SAH, or an SDH was present. Two of the 14 (14%) were false positives. Forty-four (15%) of the reports noted incidental findings of questionable significance., Conclusions: Because there are no clear guidelines for the use of CT for the investigation of headache, physicians must exercise good clinical judgment in their attempts to identify treatable disease in a cost-effective manner. ASPN clinicians made selective use of CT scans based on a combination of factors that included physician and patient concerns. CT was an imperfect tool in this setting. Most of the positive results represented false positives or incidental findings that could have led to adverse effects and additional costs.

Background: Type II diabetes mellitus is a major health problem among Native Americans, and diabetic retinopathy is a frequent complication of this disease. Screening for retinopathy can identify early disease and prevent major vision loss, but the most cost-effective screening method has not yet been determined., Methods: In a rural clinic that served more than 400 Native Americans with diabetes, we compared the accuracy of referrals made based on two screening methods: ophthalmoscopy by trained primary care physicians and seven-view nonstereoscopic, mydriatic fundal photography read by two general ophthalmologists and a retinal specialist. Patients in whom abnormal findings were detected by either screening method were then referred to a general ophthalmologist for further evaluation., Results: Two hundred forty-three examinations were performed and 83 referrals made. Both screening methods had high sensitivity for referring patients with retinopathy that required treatment or follow-up sooner than 1 year (100% for direct ophthalmoscopy by primary care physicians, 94% for the general ophthalmologist photography readers, and 100% for the retinal specialist reader). The calculated costs of screening by direct ophthalmoscopy and by retinal photography were 64% less and 44% to 35% less, respectively, than the cost of yearly ophthalmological examinations by ophthalmologists., Conclusions: Careful screening for treatable diabetic eye disease by trained primary care physicians proved to be a clinically acceptable, cost-effective strategy. Screening methods for diabetic retinopathy should be evaluated based on the absolute sensitivity, specificity, and predictive values of their ability to correctly refer patients rather than their diagnostic accuracy.

From a consecutive series of 3,847 headache patients, 1,331 patients who made first visits for new headache to 120 primary care physicians were studied for usual care over a 14-month period. Either tension or vascular headache was the initial diagnosis in 23.8 percent and 12.8 percent of patients, respectively. Nearly one half (47.8 percent) were classified as having headaches other than tension or vascular. A total of 15.3 percent of headaches were undiagnosed or were regarded as a mixture of traditional diagnostic designations. At first visit, most patients (76.6 percent) were managed without diagnostic tests. Drugs were prescribed for 73.6 percent, and advice was given for 58.6 percent. Only 2.0 percent of patients had computerized tomographic scanning ordered at first visit, although at least 46 percent met National Institutes of Health criteria, a finding with potential economic consequences of at least $2 billion. These findings suggest the need for reevaluation of diagnostic categories for headache, reevaluation of strategies for headache management, and further investigations of headache in primary care patients.

The Ambulatory Sentinel Practice Network (ASPN) is a network of primary health care practices across the United States and Canada offering (1) a laboratory for the study of populations under the care of primary care providers, and (2) surveillance of primary care problems and services. This paper reports the methods and policies developed and used by ASPN to conduct studies and describes the initial sentinel practices.