Objective: To evaluate whether financial incentives lead to improvement in self-management behaviors and glycemia in adolescents with type 1 diabetes (T1D).
Research Design And Methods: Adolescents (12- to 18-year-olds) with T1D selected incentivized self-management behavior and clinical outcome goals in a three-treatment (gain frame, loss frame, no incentives) crossover randomized controlled trial. Participants could earn up to $180 in each 12-week incentive treatment arm.
Aims: This study aimed to quantify preferences for the characteristics of a financial incentives program that would motivate adolescent engagement in type 1 diabetes (T1D) self-care.
Method: We performed a discrete choice experiment with 12-18 year-olds with T1D from two pediatric hospital endocrinology clinics (n = 317). We identified key attributes of incentives: (1) monthly value of the reward, (2) payment structure, and (3) difficulty of incentivized behaviors.
Elective genetic testing (EGT) programs that provide pharmacogenomic information to guide medication management and screen for medically actionable disease predispositions are emerging in a number of health systems. Primary care providers (PCPs) are at the forefront of test initiation, patient education, and management of EGT results. However, little research has examined the experiences of PCPs in health systems offering clinical EGT.
View Article and Find Full Text PDFPurpose: Elective genomic testing (EGT) is increasingly available clinically. Limited real-world evidence exists about attitudes and knowledge of EGT recipients.
Methods: After web-based education, patients who enrolled in an EGT program at a rural nonprofit health care system completed a survey that assessed attitudes, knowledge, and risk perceptions.
Genetic testing has the potential to revolutionize primary care, but few health systems have developed the infrastructure to support precision population medicine applications or attempted to evaluate its impact on patient and provider outcomes. In 2018, Sanford Health, the nation's largest rural nonprofit health care system, began offering genetic testing to its primary care patients. To date, more than 11,000 patients have participated in the Sanford Chip Program, over 90% of whom have been identified with at least one informative pharmacogenomic variant, and about 1.
View Article and Find Full Text PDFBackground Although almost every state medical marijuana (MM) law identifies cancer as a qualifying condition, little research supports MM's use in oncology. We hypothesized that the discrepancy between these laws and the scientific evidence base poses clinical challenges for oncologists. Oncologists' beliefs, knowledge, and practices regarding MM were examined in this study.
View Article and Find Full Text PDFBackground: Critical illness research is challenging due to disease severity and because patients are frequently incapacitated. Surrogates called upon to provide consent might not accurately represent patient preferences. Though commonplace, genetic data collection adds complexity in this context.
View Article and Find Full Text PDFPurpose: Individuals who struggle to provide substitute judgment for the critically ill often find it challenging to engage in decision making for therapeutic interventions. Although essential to the conduct of research, how these individuals respond to requests for clinical trial participation is poorly understood.
Methods: Survey data collected to examine surrogate attitudes toward research provided the conceptual framework to explore influences on decision making.
Purpose: Significant gaps exist in health care transition (HCT) preparation that can impact care and outcomes in young adults with chronic illness. No quality measure exists to directly assess adolescent experiences of HCT preparation. Our objective was to develop an adolescent-reported measure of the quality of HCT preparation received from pediatric health care providers.
View Article and Find Full Text PDFThe Centers for Medicare and Medicaid Services (CMS) uses Adult Hospital Consumer Assessment of Healthcare Providers and Systems (Adult HCAHPS) scores for public reporting and pay-for-performance for most US hospitals, but no publicly available standardized survey of inpatient experience of care exists for pediatrics. To fill the gap, CMS and the Agency for Healthcare Research and Quality commissioned the development of a pediatric version (Child HCAHPS), a survey of parents/guardians of pediatric patients (<18 years old) who were recently hospitalized. This article describes the development of Child HCAHPS, which included an extensive review of the literature and quality measures, expert interviews, focus groups, cognitive testing, pilot testing of the draft survey, a national field test with 69 hospitals in 34 states, psychometric analysis, and end-user testing of the final survey.
View Article and Find Full Text PDFJ Empir Res Hum Res Ethics
October 2014
This article is an exploratory data analysis of the determinants of confidence in a surrogate decision maker who has been asked to permit an intensive care unit (ICU) patient's participation in genetic research. We pursue the difference between surrogates' and patients' confidence that the surrogate can accurately represent the patient's wishes. The article also explores whether greater confidence leads to greater agreement between patients and surrogates.
View Article and Find Full Text PDFIt is estimated that approximately 350,000 individuals undergo anterior cruciate ligament (ACL) reconstruction surgery in each year in the US. Although ACL-reconstruction surgery and postoperative rehabilitation are successfully completed, deficits in postural control remain prevalent in ACL-reconstructed individuals. In order to assist the lack of balance ability and reduce the risk of retear of the reconstructed ACL, physicians often provide a functional knee brace on the patients' return to physical activity.
View Article and Find Full Text PDFBackground: Collection of genetic biospecimens as part of critical illness investigations is increasingly commonplace. Oversight bodies vary in restrictions imposed on genetic research, introducing inconsistencies in study design, potential for sampling bias, and the possibility of being overly prohibitive of this type of research altogether. We undertook this study to better understand whether restrictions on genetic data collection beyond those governing research on cognitively intact subjects reflect the concerns of surrogates for critically ill patients.
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