The Study to Explore Early Development (SEED): a multisite epidemiologic study of autism by the Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) network.

The Study to Explore Early Development (SEED), a multisite investigation addressing knowledge gaps in autism phenotype and etiology, aims to: (1) characterize the autism behavioral phenotype and associated developmental, medical, and behavioral conditions and (2) investigate genetic and environmental risks with emphasis on immunologic, hormonal, gastrointestinal, and sociodemographic characteristics. SEED uses a case-control design with population-based ascertainment of children aged 2-5 years with an autism spectrum disorder (ASD) and children in two control groups-one from the general population and one with non-ASD developmental problems. Data from parent-completed questionnaires, interviews, clinical evaluations, biospecimen sampling, and medical record abstraction focus on the prenatal and early postnatal periods. SEED is a valuable resource for testing hypotheses regarding ASD characteristics and causes.

Attendance and graduation patterns in a group-model health maintenance organization alternative cardiac rehabilitation program.

PURPOSE: Poor rates of participation in cardiac rehabilitation programs are well documented, especially among women and older patients. The Colorado Kaiser Permanente Cardiac Rehabilitation (KPCR) program is a home-based, case-managed, goal-oriented program with an active recruitment process and unlimited program length. This study evaluated the participation rates for the program and the predictors of attendance and graduation. METHODS: Patients hospitalized with acute myocardial infarction, coronary artery bypass graft, and percutaneous coronary intervention from June 1999 to May 2000 (n = 1030) were identified from the administrative database, and the proportion captured by the KPCR staff was determined. Subsequent attendance and graduation patterns were evaluated. RESULTS: Nearly 94% of patients with one of the three aforementioned conditions were identified by the rehabilitation staff, and 41% of all patients attended the KPCR program. More than 75% of the patients who participated went on to graduate from the program. Gender comparisons showed no difference in participation between men (66.8%) and women (59.7%) (P =.07). Participation rates were inversely associated with age, yet age was not associated with graduation from the program. Surgical interventions and two or more events experienced within the first 4 weeks of the index event were the strongest predictors of attendance and graduation from the KPCR program. CONCLUSIONS: Innovative approaches for the capture and retention of patients in cardiac rehabilitation programs are urgently needed. The alternative program evaluated in this study showed little difference in participation between men and women, yet participation among older patients remained poor. Overall, patients who underwent surgical interventions or multiple events were more likely to attend and graduate from the program.

A patient-derived perspective of health-related quality of life with peripheral arterial disease.

PURPOSE: To evaluate the effects of peripheral artery disease (PAD) on health-related quality of life (HRQoL) from the patient's perspective to establish a foundation for systematic PAD-specific HRQoL assessment in this population. DESIGN: Grounded theory methodology. METHODS: Open-ended, tape-recorded interviews were conducted with 38 patients (24 men, 14 women) 44 to 83 years old (mean 65) from two US medical centers to report patient experience of PAD and its perceived effects on HRQoL. Tapes were transcribed and analyzed to identify themes and conceptual domains pertinent to the experience of PAD in this population. RESULTS: Seven major themes were identified: (a) delay in diagnosis and frustration with management of disease; (b) pain; (c) limitation in physical functioning; (d) limitation in social and role functioning; (e) compromise of self; (f) uncertainty and fear; and (g) adaptation to the effects of the disease and demonstration of resiliency. CONCLUSIONS: These findings indicate important psychosocial and emotional consequences of PAD that existing HRQoL questionnaires do not indicate. More complete data might lead to greater understanding of the effects of PAD, serving as the foundation for a more sensitive instrument to assess HRQoL as a basis for more effective interventions.