Mast Cell Diseases in Practice and Research: Issues and Perspectives Raised by Patients and Their Recommendations to the Scientific Community and Beyond.

BACKGROUND: Since 2010, patients and physicians have collaborated to understand unmet needs of patients with mast cell diseases, incorporating mastocytosis and mast cell activation disorders, which include mast cell activation syndromes. OBJECTIVE: This Open Innovation in Science project aims to expand understanding of the needs of patients affected by mast cell diseases, and encourage global communication among patient advocacy groups, physicians, researchers, industry, and government. A major aim is to support the scientific community's efforts to improve diagnosis, management, therapy, and patients' quality of life by addressing unmet needs. METHODS: In collaboration with mast cell disease specialists, 13 patient advocacy groups from 12 countries and regions developed lists of top patient needs. A core team of leaders from patient advocacy groups collected and analyzed the data and proposed possible actions to address patient needs. RESULTS: Findings identified similarities and differences among participating countries in unmet needs between patients with mastocytosis and those with mast cell activation syndromes. Issues emphasized struggles relating to the nature and rarity of mast cell diseases, their impact on quality of life, the diagnostic process, access to appropriate care, more effective treatment, and the need for research. CONCLUSIONS: Solutions vary across countries because situations differ, in particular regarding the existence of and access to centers of excellence and reference centers. Multifaceted mast cell activation syndrome barriers necessitate innovative approaches to improve access to appropriate care. The outcomes of this project should greatly support scientists and clinicians in their efforts to improve diagnosis, management, and treatment of patients with mastocytosis and mast cell activation disorders.

Documenting Physical Therapy Dose for Individuals With Cerebral Palsy: A Quality Improvement Initiative.

PURPOSE: To describe the quality improvement (QI) activities used to improve treatment dose documentation for individuals with cerebral palsy (CP) and to discuss insights gained from this project. METHODS: Global and smart aims were established and interventions were tested from January 2017 through February 2018 using Plan-Do-Study-Act cycles. Performance was tracked overtime using run and control charts. RESULTS: The QI initiative resulted in a sustainable increase in percentage of dose elements present in the electronic medical record from 78% to 94%. Key drivers of improvement included (1) knowledge and awareness of dose, (2) clinician buy-in, (3) effective engagement of child and parent, (4) therapist knowledge of evidence-based treatments, (5) transparent and reliable documentation system, and (6) audit and clinician feedback. CONCLUSIONS: QI methods provided the tools to improve workflow and increase dose documentation for individuals with CP.

Health insurance coverage in Central and Eastern Europe: trends and challenges.

Health insurance systems in Central and Eastern Europe have evolved in different ways from the centralized health systems inherited from the Soviet era, but there remain common trends and challenges in the region. Health spending is low in comparison to the spending of pre-2004 European Union members, but population aging, medical technology, economic growth, and heightened expectations will generate major spending pressures. Social health insurance is the dominant model in the region, but coverage is uneven. Key3reform issues include identifying ways to encourage additional investment in the health sector; and defining formal benefit packages, copayments, and the role of private insurance.