C. C. Levine

Young Adult Caregivers: A First Look at an Unstudied Population

OBJECTIVES We examined the prevalence, characteristics, and responsibilities of young adults aged 18 to 25 years who are caregivers for ill, elderly, or disabled family members or friends. METHODS We analyzed 2 previously published national studies (from 1998 and 2004) of adult caregivers. RESULTS Young adult caregivers make up between 12% and 18% of the total number of adult caregivers. Over half are male, and the average age is 21. Most young adults are caring for a female relative, most often a grandmother. Young adult caregivers identified a variety of unmet needs, including obtaining medical help, information, and help making end-of-life decisions. CONCLUSIONS Analysis of these 2 surveys broadens our understanding of the spectrum of family caregivers by focusing on caregivers between the ages of 18 and 25 years. The high proportion of young men raises questions about the appropriateness of current support services, which are typically used by older women. Concerted efforts are essential to ensure that young adults who become caregivers are not deterred from pursuing educational and career goals.

Questions and (some very tentative) answers about hospital ethics committees.

A question-and-answer format is used to provide background information on the status, organization, and role of hospital ethics committees. The information consists of a synthesis of published materials and of the views of Hastings Center staff, visiting scholars, and others experienced with ethics committees. Topics addressed include the number of hospital ethics committees in existence; the possible functions of such committees; their benefits and their disadvantages; organizational models; and the selection and education of ethics committee members.

The ethics of screening for early intervention in HIV disease.

The potential for early medical intervention to slow or prevent the development of AIDS in HIV-positive individuals has led to calls for widespread testing of asymptomatic at-risk persons. Levine and Bayer discuss the ethical aspects of these proposals, distinguishing among the justifications for screening and evaluating each independently. They present current clinical evidence for early intervention and explore its potential risks and benefits. Using the ethical principles of respect for persons, the harm principle, beneficience, and justice, they analyze the justifications for and the limits of screening infants, adolescents, and adults for HIV seropositivity. Levine and Bayer conclude that while there are clinical and ethical grounds for establishing voluntary screening programs, conditions of informed consent and confidentiality must be met, and protection from discrimination and provision of follow-up services for infected individuals are essential.

Screening blood: public health and medical uncertainty.

In March 1985, the Food and Drug Administration approved the first of five applications from drug companies to market a blood test kit to detect antibodies to HTLV-III, a virus linked with acquired immunodeficiency syndrome (AIDS). The authors discuss the reliability of the antibody test, the immediate problems it raises concerning notification and confidentiality, and the long-term questions that AIDS-antibody testing poses about mass screening, mandatory reporting of positive results to public health officials, behavioral change, and public health interventions under conditions of medical uncertainty.

Depo-Provera and contraceptive risk: a case study of values in conflict.

Although the injectable contraceptive Depo-Provera (medroxyprogesterone acetate) is currently being used by 1.25 million women worldwide and is available commercially in over 60 countries approval for marketing in the U.S. has not been granted after 12 years of debate. Possibly the final installment in what has become a controversy will probably take place later this year when a special FDA board of inquiry meets to consider the issue. More is at stake than the licensing of a particular drug. The Depo-Provera case represents a clash of political social and ethical values. The author reviews the drugs risks and benefits to support the conclusion that the FDA should continue to withhold approval of Depo-Provera as a contraceptive and that Congress should continue the current ban on exporting drugs not licensed for use in the U.S. Although Depo-Provera is a contraceptive that works is convenient to use simple to administer and does not have any immediate life-threatening side effects risks include disturbed menstrual patterns weight gain delayed return of fertility after discontinuance or possible permanent infertility birth defects and carcinogenicity. Studies with laboratory animals have related the appearance of carcinomas with high doses of the drug. Perhaps the most accurate conclusion is that Depo-Provera does present a certain degree of risk in some respects higher and in many respects unknown that is not present in other approved contraceptive methods. Other factors considered include the claim that Depo-Provera is intended for poor women or 2d-class citizens; protection against abuse; exporting of the drug to the Third World; and ethical problems. It is concluded that rather than change the current legislation to make Depo-Provera available for export U.S. policy ought to be to encourage and support the kind of broad social change that will ultimately make Depo-Provera unnecessary in the Third World.

Every Picture Tells a Story ... and Then Some@@@Dancing with Broken Bones: Portraits of Death and Dying among Inner-City Poor

1. Crossing the tracks: An introduction 2. Dying poor: An invisible world 3. Dying in the public hospital system: Institutional arrangements and provider perspectives 4. Courage through suffering: Snapshots of the dying poor 5. Triumph and faith through harsh reality and personal tragedy: Lucille Angel 6. Life on the brink: Mr and Mrs Wheeler 7. A conclusion: Conscious listening, mindful presence - a lesson learned

Transient neonatal pustular melanosis

To the Editor: The presence of widespread pustules in newborns often suggests a serious infection. However, there is also a benign, inflammatory form of neonatal pustulosis. We report a case of transient neonatal pustular melanosis (TNPM), a selflimiting condition that affects full-term newborns and is characterized by the appearance of multiple sterile pustules distributed over the whole body surface. A full-term newborn boy delivered by cesarean section and aged 12 hours was referred to our department from the pediatric unit to evaluate a vesiculopustular skin rash that was present at birth. On physical examination we observed numerous pustules on normal skin measuring between 1 mm and 5 mm in diameter and located on the scalp, face, chin, neck, trunk, buttocks, and proximal third of the lower limbs (Figs. 1 and 2). Some of the lesions no longer contained fluid and consisted of superficial crusts on an area of brownish skin (Fig. 2). The patient did not present fever or any other abnormal signs and a sterile pustular rash was initially suspected. The patient was treated solely with topical mupirocin to avoid secondary bacterial infection. A differential diagnosis was made with vertical transmission of bacterial infection (Staphylococcus aureus, Streptococcus pyogenes, Pseudomonas species, listeriosis), fungal infection (candidiasis), viral infection, and syphilis. These conditions were ruled out by additional testing. Blood cultures and serology were negative for herpes simplex virus (HSV), varicella zoster virus (VZV), cytomegalovirus, and syphilis. Samples were taken from 2 pustules and urgent Tzanck test and Gram stain were carried out. Part of the exudate was sent for microbiological culture and polymerase chain reaction for HSV and VZV. The Tzanck and Gram studies showed abundant polymorphonuclear cells and normal epithelial cells with no cytological sign of infection. All other additional test results were normal. At 48 hours after birth few pustules remained, the established lesions showed peripheral desquamation, and the newborn presented excellent general health. At 4 days the condition had resolved, with only hyperpigmented macules visible in areas where the pustules had been. Based on these data, a final diagnosis of TNPM was made. TNPM is a rare disorder with a worldwide prevalence in newborn infants of less than 1%. It affects both sexes equally and is more common in black infants, in whom the incidence is 4.4%. The etiology of TNPM is unknown and no association with maternal infections or exposure to toxic substances has been detected. Clinically, TNPM is characterized by the appearance of vesicles and pustules on a background of healthy skin that is not erythematous. The areas most frequently affected are the forehead, temporal regions, cheeks, neck, back,

Discoid lupus erythematosus

Red scaly patches develop which leave pigmentation, atrophy and white scars. The lesions are usually asymptomatic but they may present with mild pruritus or sometimes pain within the lesions. DLE mainly affects areas exposed to sunlight, such as the cheeks, nose, ears, upper back, neck and the backs of hands. It may rarely occur on the palms or soles. DLE lesions may become hypertrophic, causing wart-like lesions, most often on the extensor aspects of the arms. The scalp may be affected and cause permanent scarring alopecia. DLE may affect the lips and inside the mouth, causing ulcers and scaling.

Dystrophic epidermolysis bullosa

Epidermolysis bullosa is a group of genetic conditions that cause the skin to be very fragile and to blister easily. Blisters and skin erosions form in response to minor injury or friction, such as rubbing or scratching. Dystrophic epidermolysis bullosa (DEB) is one of the major forms of epidermolysis bullosa. The signs and symptoms of this condition vary widely among affected individuals. In mild cases, blistering may primarily affect the hands, feet, knees, and elbows. Severe cases of this condition involve widespread blistering that can lead to vision loss, disfigurement, and other serious medical problems.

Chanarin-Dorfman syndrome

Chanarin-Dorfman syndrome is a condition in which fats (lipids) are stored abnormally in the body. Affected individuals cannot break down certain fats called triglycerides, and these fats accumulate in organs and tissues, including skin, liver, muscles, intestine, eyes, and ears. People with this condition also have dry, scaly skin (ichthyosis), which is usually present at birth. Additional features of this condition include an enlarged liver (hepatomegaly), clouding of the lens of the eyes (cataracts), difficulty with coordinating movements (ataxia), hearing loss, short stature, muscle weakness (myopathy), involuntary movement of the eyes (nystagmus), and mild intellectual disability.