Autonomy concerns with using contracts to enhance patient adherence.

The failure of many patients with chronic conditions to correctly follow medical advice that they hope or intend to follow is a major concern, especially as effective long-term therapies for chronic conditions materialize. Some US healthcare providers have responded with strategies that involve implementing contracts with their patients, including provisions that may deny future treatments after continued nonadherence. This is among the first articles to explicitly discuss the ethics of patient contracts.

A proposed framework for patient engagement throughout the broader research enterprise.

Patient engagement in clinical research refers to the involvement of patients beyond the role of research subject. To date, the goals of patient engagement have not been clearly defined for each stage of the research enterprise, which, when viewed broadly, encompasses stages such as setting research priorities, interpreting and incorporating research results in clinical guidance, and translating study results into insurance coverage policies. This article presents a new framework for patient engagement by first describing the goals of patient engagement at each stage of the research enterprise and then establishing how to prioritize the types of patient expertise that are needed to achieve these goals.

Risk Factors for Gaps in Care during Transfer from Pediatric to Adult Cystic Fibrosis Programs in the United States.

RATIONALE: With improved survival into adulthood, the number of dedicated adult cystic fibrosis (CF) care programs has expanded in the United States over the past decade. Transfer from pediatric to adult CF programs represents a potential time for lapses in recommended health care. OBJECTIVES: To describe variability in transfer between pediatric and adult CF care programs and to identify factors associated with prolonged gaps in care. METHODS: Using the U.S. CF Foundation Patient Registry, we identified individuals with CF who transferred care from a pediatric to an adult CF care program during 2007 to 2013. A gap in care was defined as the time in days between the last recorded pediatric encounter and the first recorded adult encounter. A hierarchical multivariable regression model was applied to investigate the effect of program- and patient-level factors on gaps in care. RESULTS: There were 1,946 individuals at 155 pediatric CF programs who transferred to an adult CF program during the analytic period. The mean age at transfer was 21.1 years, with 68% transferring care between ages 18 and 21 years. The mean gap in care during transfer was 183 days (median, 106 d; range, 2-1,843 d); 47% had a less than 100-day gap, and 13% had a greater than or equal to 365-day gap (prolonged gap). Prolonged gaps in care were more likely to occur among those younger than age 18 years (odds ratio, 3.33; 95% confidence interval, 2.06-5.37) at the time of transfer and those who transferred to an adult program that was in a different city from their pediatric or affiliate program (odds ratio, 2.16; 95% confidence interval, 1.48-3.17). Having any health insurance coverage was associated with decreased likelihood of prolonged gaps (private insurance vs. no insurance [odds ratio, 0.15; 95% confidence interval, 0.09-0.23] or any government insurance versus no insurance [odds ratio, 0.11; 95% confidence interval, 0.07-0.18]). Lung function, nutritional status, and receipt of intravenous antibiotics in the final year of pediatric care were not associated with the length of gap in care during transfer. CONCLUSIONS: In the United States, the majority of individuals transferring from pediatric to adult CF care do so between ages 18 and 21 years. A minority had a gap greater than or equal to 365 days during transfer to adult care, suggesting that most did not have a disruption in recommended quarterly care visits during the transfer period. Risk factors for prolonged gaps in care include younger age at transfer, lack of health insurance, and relocation. Care coordination during transition in CF may minimize lapses in care by identifying and more closely addressing the needs of individuals at highest risk.