To measure the effects of skin disease on patients' quality of life, we developed a 61-item self-administered survey instrument called Skindex. Skindex has eight scales, each of which addresses a construct, or an abstract component, in a comprehensive conceptual framework: cognitive effects, social effects, depression, fear, embarrassment, anger, physical discomfort, and physical limitations. Item responses are standardized from 0 (no effect) to 100 (maximal effect); a scale score is the average of responses to items addressing a construct. In 201 patients seen by dermatologists, mean scale scores (+/-SD) ranged from 14 (+/-17) for physical limitations to 31 (+/-22) for physical discomfort. Scale scores were reproducible after 72 h (r = 0.68-0.90) and were internally consistent (Cronbach's alpha = 0.76-0.86). Construct validity was assessed in two ways: (i) in a comparison of patients with inflammatory dermatoses and patients with isolated lesions, patients with inflammatory dermatoses had higher scale scores, and (ii) in an exploratory factor analysis, 78% of the common variance was explained by seven factors that correlated with the scale scores of Skindex. Most of the a priori scale scores changed in the expected direction in patients who reported that their skin conditions had improved or worsened after 6 mo. Finally, physicians' judgments of disease severity did not consistently correlate with Skindex scores. These preliminary data suggest that Skindex reliably and responsively measures the effects of skin disease on patients' quality of life and may supplement clinical judgments of disease severity.

The validity of the medical record and patient questionnaire for measuring delivery of different health services varied with the service. This report can be used to choose the optimal nonobservational method of measuring the delivery of specific ambulatory medical services for research and physician profiling and to interpret existing health services research studies using these common measures.

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Purpose: To identify characteristics of physicians, patients, and visits associated with obtaining family history information in community family practice. Methods: Research nurses directly observed 4454 patient visits to 138 family physicians and reviewed office medical records. Results: Family history was discussed during 51% of visits by new patients and 22% of visits by established patients. Physicians' rates of family history-taking varied from 0% to 81% of visits. Family history was more often discussed at well care rather than illness visits. The average duration of family history discussions was <2.5 minutes. Conclusions: These data can form the basis for realistic interventions to increase the use of family history in primary care. Genetics in Medicine, 2000:2(3):180-185.

Context Most children diagnosed as having leukemia become research subjects in randomized clinical trials (RCTs), but little is known about how randomization is explained to or understood by parents. Objective To investigate physicians' explanation and parental understanding of randomization in childhood leukemia RCTs. Design and Setting A multisite study of the informed consent communication process for RCTs of childhood leukemia. Consecutive cases were recruited from pediatric oncology inpatient wards at 6 US children's hospitals associated with major academic medical centers from July 1, 1999, until December 31, 2001. The informed consent conferences were observed and audiotaped, and the information obtained was coded and analyzed. Parents were interviewed shortly after the conference to ascertain their understanding. Participants Parents and members of the health care team who participated in 137 informed consent conferences for children with newly diagnosed acute leukemia. Main Outcome Measures Observed explanations of randomization and parental understanding of randomization after the consent conference. Results Randomization was explained by physicians in 83% of cases and a consent document was presented during the conference in 95% of cases. Interviews after the conference demonstrated that 68 (50%) of 137 parents did not understand randomization. Parents of racial minority and lower socioeconomic status were less likely to understand randomization (PϽ.001 for each). Discussion of specific clinical trial details and the presence of a nurse during the conference were associated with understanding. Eighty-four percent of children were enrolled in a leukemia trial. Conclusions Despite oral and written explanation, half of the parents in this study did not understand randomization for childhood leukemia trials. To make informed consent more effective, future research must seek to improve communication during this critical interchange.

A substantial proportion of PCPs report diagnostic and treatment approaches that are consistent with high-quality care. Differences in approach were associated more with specialty than with type of depressive disorder or degree of capitation. Quality improvement efforts need to (1) be tailored for different physician specialties, (2) emphasize the importance of differentiating major depression from other depressive disorders and tailoring the treatment approach accordingly, and (3) address organizational barriers to best practice and knowledge gaps about depression treatment.

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