Information needs in terminal illness.

Despite evidence that doctor-patient communication affects important patient outcomes, patient expectations are often not met. Communication is especially important in terminal illness, when the appropriate course of action may depend more on patient values than on medical dogma. We sought to describe the issues important to terminally ill patients receiving palliative care and to determine whether patient characteristics influence the needs of these patients. We utilized a multimethod approach, first conducting interviews with 22 terminally ill individuals, then using these data to develop a more structured instrument which was administered to a second population of 56 terminally ill patients. Patient needs and concerns were described and associations between patient characteristics and issues of importance were evaluated. Seven key issues were identified in the initial interviews: change in functional status or activity level; role change; symptoms, especially pain; stress of the illness on family members; loss of control; financial burden and conflict between wanting to know what is going on and fearing bad news. Overall, respondent needs were both disease- and illness-oriented. Few easily identifiable patient characteristics were associated with expressed concerns or needs, suggesting that physicians need to individually assess patient needs. Terminally ill patients receiving palliative care had needs that were broad in scope. Given that few patient characteristics predicted responses, and that the majority opinion may not accurately reflect that of an individual patient, health care providers must be aware of the diverse concerns among this population and individualize assessment of each patient's needs and expectations.

Experiences and attitudes concerning genetic testing and insurance in a Colorado population: a survey of families diagnosed with fragile X syndrome.

This study examined the relationship between diagnosis, experience with insurance underwriting, and perceptions of difficulties with insurance in genetically tested families. Discrimination was strictly defined as the misuse of genetic information in underwriting. Forty-eight families received a survey and thirty-nine (81%) responded. No insurance cancellations were reported although many families believed that it happened often. The fear evidenced by the respondents was out of proportion to the experiences and 66% of the families reported moderate to moderate to extreme worry over losing health insurance. Genetic counselors and others involved in caretaking of diagnosed families must expand their roles to assist in providing access to local resources and information concerning insurance issues and other social issues. Addressing medical issues alone will not provide the assistance these families require.

A prospective study of heparin-induced osteoporosis in pregnancy using bone densitometry.

OBJECTIVE: Our purpose was to evaluate the subclinical occurrence of heparin-induced osteoporosis in pregnancy, by means of bone densitometry. STUDY DESIGN: A prospective, consecutive cohort of 14 pregnant women requiring heparin therapy and 14 pregnant controls matched for age, race, and smoking status was identified by 20 weeks' gestation at a university medical center. Proximal femur bone density measurements were taken at baseline, immediately post partum, and 6 months post partum in the cases and controls. Vertebral measurements were also obtained on both groups immediately post partum and 6 months post partum. Bone density as a function of heparin dosing and duration was examined. Nonparametric statistical tests were used for all comparisons. RESULTS: Five of 14 cases (36%) had a > or = 10% decrease from the baseline proximal femur measurements to immediate postpartum values versus none of the 14 matched controls (p = 0.04). Mean proximal femur bone density measurements also decreased in the cases (p = 0.01); this difference continued to be statistically significant 6 months post partum (p = 0.03). No dose-response relationship could be demonstrated. CONCLUSION: Heparin adversely affected bone density in about one third of exposed patients.

Arrhenius plots of acetylcholinesterase activity in mammalian erythrocytes and in Torpedo electric organ. Effect of solubilization by proteinases and by a phosphatidylinositol-specific phospholipase C.

The temperature-dependence of the catalytic activity of acetylcholinesterase (AChE) from rat erythrocyte-ghost membranes and from Torpedo electric-organ membranes was examined. In the case of rat erythrocyte AChE, a non-linear Arrhenius plot was observed both before and after solubilization by a phosphatidylinositol-specific phospholipase C or by proteinase treatment. Similarly, no significant differences were observed in Arrhenius plots of Torpedo electric-organ AChE before or after solubilization. These results support our suggestion that the catalytic subunit of AChE does not penetrate deeply into the lipid bilayer of the plasma membrane and also suggest that care must be taken in ascribing break points in Arrhenius plots of membrane-bound enzymes to changes in their lipid environment.