Setting the agenda for quality improvement in pediatric sickle cell disease.

OBJECTIVE: Despite recent scientific advances, children with sickle cell disease (SCD) continue to experience high mortality and significant morbidity, in part due to variations in the care provided. We sought to identify and compare drivers for quality improvement among clinical staff and parents of children with SCD. METHODS: We interviewed clinical staff across care settings in an urban teaching hospital to elicit their perspectives on improving care for children with SCD. Concurrently, we invited parents of children with SCD to participate in focus groups to identify their needs. Findings are reported according to Consolidated Criteria for Reporting Qualitative Research guidelines. RESULTS: We conducted 29 interviews with clinical staff and 4 focus groups with parents. Both groups identified the need for effective communication of relevant patient information across disciplines as a key area for improvement. Clinical staff cited standardization of care delivery as a top priority through increased accessibility of pertinent clinical information, enhanced pain assessment and management, and improved availability of clinical decision-making tools. Parents listed the need for increased community awareness about SCD, including school and day care staff, enhanced parental education and peer support, and self-management skills for their children as opportunities to improve pediatric SCD care. CONCLUSIONS: Identifying drivers for quality improvement is a critical first step in transforming the care provided to children with SCD. Using a systematic approach that includes eliciting the perspectives of both clinicians and parents may significantly enhance the development of a patient-centered quality improvement agenda.

A proposed framework for understanding the forces behind legislation of universal health insurance: lessons from ten countries.

OBJECTIVE: To understand the forces propelling countries to legislate universal health insurance. DATA SOURCE/STUDY DESIGN: Descriptive review and exploratory synthesis of historic data on economic, geographic, socio-demographic, and political factors. DATA EXTRACTION METHODS: We searched under "insurance, health" on MEDLINE and Google Scholar, and we reviewed relevant books and articles via a snowball approach. PRINCIPAL FINDINGS: Ten countries with universal health insurance were studied. For the five countries that passed final universal insurance laws prior to 1958, we found that two forces of "historical context" (i.e., social solidarity and historic patterns), one "ongoing dynamic force" (political pressures), and "one uniqueness of the moment" force (legislative permissiveness) played a major role. For the five countries that passed final legislation between 1967 and 2010, the predominant factors were two "ongoing dynamic forces" (economic pressures and political pressures) and one "uniqueness of the moment" force (leadership). In general, countries in the former group made steady progress, whereas those in the latter group progressed in abrupt leaps. CONCLUSIONS: The lessons of more recent successes-almost all of which were achieved via abrupt leaps-strongly indicate the importance of leadership in taking advantage of generalized economic and political pressures to achieve universal health insurance.