Implementer-initiated adaptation of evidence-based interventions: kids remember the blue wig.

Adaptation of evidence-based interventions by implementers is widespread. Although frequently viewed as departures from fidelity, adaptations may be positive in impact and consistent with fidelity. Research typically catalogs adaptations but rarely includes the implementers' perspectives on adaptation. We report data on individuals implementing an evidence-based teen dating violence prevention curriculum. Key informant interviews (n = 20) and an online focus group (n = 10) addressed reasons for adaptations, adaptation processes and kinds of adaptations. All implementers described making adaptations, which they considered necessary to achieving intended outcomes. Adaptations were tailored to needs of individual students or learning opportunities presented by current events, fine-tuned over repeated applications and shared with colleagues. Adaptations modified both content and delivery and included both planned and in-the-moment changes. Implementers made adaptations to increase student engagement, and to fit students' learning needs, learning style, social maturity and culture. Student engagement served as an indicator that adaptation might be needed and provided feedback about the immediate effects of the adaptation. These findings underscore the value of fidelity assessments that measure participant response, intervention-specific guidance to implementers and evaluation of the impact of adaptations on participant response and intervention outcomes.

Populations at increased risk of HIV infection: current knowledge and limitations.

Research data describing the prevalence and patterns of behaviors that place persons at increased risk of HIV infection are extremely limited. The scarcity of data has constrained potential applications of surveillance data, research on specific high-risk behaviors, and epidemiological studies. This article critically reviews available research for four population groups: intravenous drug users, homosexual males, and sexually active adolescents and adults. The fallacies inherent in estimating risk group size underscore the need for population-based research that can provide detailed data on sexual and drug use behaviors.

Biochemical and histopathological studies on patients with mucopolysaccharidoses, two of whom had been treated by fibroblast transplantation.

Biochemical and pathological observations on tissues from two patients with Hurler disease (mucopolysaccharidosis IH; alpha-L-iduronidase deficiency) who had been treated by fibroblast transplants as a means of enzyme replacement treatment are reported. These results and those obtained in three surgical specimens [ligamentum flavum with dura mater from a case of Scheie disease (mucopolysaccharidosis IS; alpha-L-iduronidase deficiency); a fetus with Hurler disease; and tonsil from a patient with Hunter disease (mucopolysaccharidosis II; alpha-L-idurono-2-sulphate sulphatase deficiency)] illustrate the inadequacy of routine histological processing to demonstrate the abnormal glycosaminoglycan accumulation in this group of diseases. A combined approach using histochemistry and electron microscopy enables the extent of both extracellular and intracellular involvement to be assessed. The fetus (20 wk gestation) already showed evidence of Hurler disease. The pathological appearances in both of the fibroblast-transplanted patients were those which would have been expected in patients dying with unmodified Hurler disease. There was no detectable alpha-L-iduronidase activity in the brain, liver, kidney or in fibroblasts cultured from either the transplantation sites or from remote subcutaneous sites in either of the transplanted patients. These results are discussed from the viewpoint of their bearing on the pathophysiology of the mucopolysaccharidoses and proposals for their treatment by enzyme replacement.

Studies on the composition of urinary glycosaminoglycans and oligosaccharides in patients with mucopolysaccharidoses who were receiving fibroblast transplants.

This communication reports studies on the composition of the urinary glycosaminoglycans and oligosaccharides in mucopolysaccharidosis patients who were being treated by fibroblast transplantation. The urinary glycosaminoglycans were precipitated with 9-aminoacridine, the oligosaccharides remaining in solution. Both fractions were further subfractionated by gel filtration. The glycosaminoglycan subfractions were examined for their content of iduronic acid, glucuronic acid, galactosamine and glucosamine. We found no changes in these parameters in a patient who had been treated by repeated fibroblast transplantations over the course of 4 1/2 years. The amino sugar composition of the oligosaccharide fraction was examined and shown to be unchanged. We also found no changes in the degree of sulphation of the urinary glycosaminoglycans specifically related to the transplant in four patients with Hurler disease and two with Hunter disease. We conclude that fibroblast transplantation does not produce detectable changes in the carbohydrate content or degree of sulphation of the urinary glycosaminoglycans and oligosaccharides.

Consumer perspectives on information needs for health plan choice.

The premise that competition will improve health care assumes that consumers will choose plans that best fit their needs and resources. However, many consumers are frustrated with currently available plan comparison information. We describe results from 22 focus groups in which Medicare beneficiaries, Medicaid enrollees, and privately insured consumers assessed the usefulness of indicators based on consumer survey data and Health Employer Data Information Set (HEDIS)-type measures of quality of care. Considerable education would be required before consumers could interpret report card data to inform plan choices. Policy implications for design and provision of plan information for Medicare beneficiaries and Medicaid enrollees are discussed.

Paid advertising for AIDS prevention--would the ends justify the means?

An examination by the Centers for Disease Control and the Research Triangle Institute concluded that "hard-to-reach" populations could be reached with AIDS prevention messages through the broadcast and print media and that a study should be undertaken to assess whether paid placement of these messages could have an effect on HIV-related behaviors. The recommended target population for a study of paid advertising would be sexually active 18-24-year-old black urban dwellers. Its behavioral objectives would include abstinence and safer sex practices. For any evaluation of a paid advertising campaign to be valid, there would have to be extensive audience profiling, research into the development of the message, pretesting of the message, and involvement of the community. The proposed study would include measurement of various "dosage" levels of paid advertising, use of a no-intervention comparison group, and a novel data collection technique. Although a specific target group and specific messages would be involved, the evaluation would make a substantial contribution to resolving the broader issue of whether and how mass media should be used directly or indirectly to change or reinforce health-related behaviors.

Measuring performance in child welfare: secondary effects of success.

The Adoption and Safe Families Act of 1997 mandates the development of a system to rate the performance of state child welfare programs. The resulting system, built on broader efforts to measure outcomes for children and families who receive support and services from the child welfare system, will inform perspectives on family foster care in the next century. Drawing on findings from evaluations of recent reform initiatives in Alabama, North Carolina, and Ohio, this article suggests that performance measurement systems must be adaptable to changing circumstances, particularly when improvements in one area can affect standards and expectations in others.

Studies on human phenylalanine Mono-oxygenase. I. Restricted expression.

Enzyme assays for phenylalanine mono-oxygenase have been performed on a variety of non-hepatic human cell types under varying conditions. The cell types studied were cultured fibroblasts, short-term lymphocyte cultures, long-term lymphoblastoid cultures, cultured amniotic fluid cells, hair roots and placental extracts. The cultured cells were assayed after growth under standard conditions and in the presence of a high concentration of substrate, a low concentration of end-product, added hydrocortisone or dexamethasone and under combinations of these conditions. In no instance was a significant enzyme activity obtained.

A newly recognized syndrome of connective tissue dysplasia in siblings (previously described as a variant of Morquio disease).

Siblings (one male and one female) with a striking combination of multiple skeletal abnormalities, hypermobility in some joints with a restricted range of movements in others, mesodermal dysgenesis of the iris and cutaneous atrophy with thin skin, multiple telangiectases, shallow ulcers, and café au lait lesions are described. The patients were reported in early childhood as cases of Morquio disease (mucopolysaccharidosis IV) with previously unrecognized skin changes. The results of specific enzyme assays exclude a diagnosis of both of the known biochemical types of Morquio disease; the evolution of their disease and the present clinical findings are in accord with this. These patients do not correspond to any of the other mucopolysaccharidoses, mucolipidoses or sphingolipidoses. We have been unable to classify them as examples of other inherited skeletal dysplasias and we suggest that they probably have an, as yet unidentified, recessively inherited disorder of collagen.