Introduction Rebecca L. Walker; Michele Rivkin-Fish; Mara Buchbinder
Understanding Health Inequalities and Justice,
11/2016
Book Chapter
Across the globe and within local communities, people suffer from disease, disability, and early mortality at vastly different rates from one another. Some of these differences, such as those that ...stem from impoverished environmental conditions or a lack of access to health care, strike many observers as unjust; others, such as those that reflect choices to engage in potentially dangerous elite sports, may seem to have little to do with justice. How we understand the relationship between health inequalities and justice is influenced by many factors, including notions of deservingness, choice, vulnerability, luck, cultural and familial practices, and social group
Palliative care experts have urged people to document end-of-life wishes in advance directives, while end-of-life startups have tapped into the market potential of death. Historically, humans have ...largely been passive witnesses to their own deaths. Since the middle of the 20th century, however, technological developments in medicine have offered increasing possibilities for human control over one’s own death. ...if she didn’t die, her friends would need to go home, and she would be expected at the hospital on Tuesday, which had become, for her, a fate worse than death. ...she got up at 4 a.m., grabbed her laptop, and went back to her bedroom to pen love letters to friends. Using beautiful pottery and sacred chalices, they emptied 100 capsules—the number of Seconal pills required to form a lethal dose—singing while they worked, and carefully mixed the powder with juice.
Most patients who misuse alcohol do not receive alcohol counseling from their providers. This study evaluated primary care patient and provider characteristics associated with receipt of ...alcohol-related advice and whether patients were advised to drink less or to abstain.
Outpatients from seven Veterans Affairs (VA) general medicine clinics were eligible if they screened positive for alcohol misuse, completed the Alcohol Use Disorders Identification Test (AUDIT) and answered questions about alcohol-related treatment and advice. Hierarchical logistic regression was used to evaluate patient and provider characteristics associated with patient reports of alcohol-related advice from a primary care provider in the past year.
Among 5191 patients with alcohol misuse in the past year, 1554 (30%) reported receiving alcohol-related advice from their primary care provider during that time. Of patients advised, 73% reported advice to abstain. The likelihood of reporting advice increased as AUDIT scores increased: from 13% of patients with AUDIT scores <8 to 71% of those with scores > or =20. After adjustment for important confounders, measures reflecting the severity of alcohol misuse were most strongly associated with receipt of alcohol-related advice. Adjusted analyses also revealed increased odds of receiving advice among patients who reported liver disease, hypertension, current smoking or continuity of care. No measured provider characteristic was associated with giving advice in the fully adjusted model.
This multisite VA study found that most patients with alcohol misuse did not receive alcohol counseling from a primary care provider. Moreover, providers predominantly offered advice to abstain, and they appeared to focus on patients with the most severe problems due to drinking or medical contraindications to drinking.
Congenital dyserythropoietic anemias (CDAs) are characterized by ineffective erythropoiesis and distinctive erythroblast abnormalities; the diagnosis is often missed or delayed due to significant ...phenotypic heterogeneity. We established the CDA Registry of North America (CDAR) to study the natural history of CDA and create a biorepository to investigate the pathobiology of this heterogeneous disease. Seven of 47 patients enrolled so far in CDAR have CDA-I due to biallelic CDAN1 mutations. They all presented with perinatal anemia and required transfusions during infancy. Anemia spontaneously improved during infancy in three patients; two became transfusion-independent rapidly after starting interferon-α2; and two remain transfusion-dependent at last follow-up at ages 5 and 30 y.o. One of the transfusion-dependent patients underwent splenectomy at 11 y.o due to misdiagnosis and returned to medical attention at 27 y.o with severe hemolytic anemia and pulmonary hypertension. All patients developed iron overload even without transfusions; four were treated with chelation. Genetic testing allowed for more rapid and accurate diagnosis; the median age of confirmed diagnosis in our cohort was 3 y.o compared to 17.3 y.o historically. In conclusion, CDAR provides an organized research network for multidisciplinary clinical and research collaboration to conduct natural history and biologic studies in CDA.
•The CDA registry (CDAR) is an organized network for the collaborative study of CDAs.•Genetic testing allows for a rapid and accurate diagnosis of CDA type I (CDA-I).•Anemia severity in CDA-I is variable and iron overload develops even without transfusions.•Non-erythroid features, especially skeletal features affecting distal extremities, point to CDA-I diagnosis.•Interferon-α2 improves anemia and iron overload in at least some patients with severe CDA-I.
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