The 3C Study: Coverage cost and care of type 1 diabetes in China—Study design and implementation

AimTo describe coverage, cost and care of type 1 diabetes (T1D) in 2 regions of China – Beijing and Shantou – including:Estimating the numbers of people with T1D diabetes.Estimating the economic burden of T1D and financial barriers to care.Identifying scale of necessary government investment to improve health care coverage.Defining the burden of disease based on clinical outcomes.Describing the education and care experience of people with T1D with comparison to selected clinical practice guidelines.Describing the information processes associated with diabetes care and education.MethodsThis is a mixed-methods descriptive study with three arms – coverage, cost and care. It is taking place in 4 tertiary hospitals, 3 secondary hospitals and 4 primary health facilities in Beijing, and 2 tertiary hospitals, 2 secondary hospitals and 2 primary health centres in Shantou, China. Two additional hospitals are involved in the coverage arm of the study. T1D participants are recruited from a 3-year list generated by each hospital and from those attending the outpatient clinic or admitted to the inpatient ward. Participants also include health care professionals and government officials. To determine coverage of care, a list of people with T1D is being developed including information on diagnosis, age, sex and vital status. The age and sex distribution will be compared with the expected distribution.To estimate the economic burden of T1D three groups of costs will be calculated – direct medical costs, direct non-medical costs and indirect costs from different perspectives of analysis (patients and their families, health system, insurer and societal perspective). The data are being collected from people with T1D (patient–parents face-to-face interviews), hospital billing departments, medical records and government officials using a combined “top-down, bottom-up” approach developed to validate the data. Quality of life is assessed using the EQ-5D tool and burden of disease is measured based on clinical outcomes and complications. Standard care will be defined, costed and compared to the cost of current care identified within the study to determine the investment required to improve outcomes.The third arm includes three components – health policy, clinical care and education, and information management. Face-to-face, semi-structured interviews are conducted with people with T1D (for those <15 years of age parents are interviewed), health care professionals, senior hospital management and government officials. The core Summary of Diabetes Self-Care Activities Measure plus an additional 6 questions from the revised SDSCA scale are used to assess patient self-care. A medical records audit tool is used to assess care [7]. Clinical outcomes and self-care activities will be analysed for associations with care and education. Information management and care processes will be described using the Standard for Integration Definition for Function Modelling (IDEF0) [8].Progress to dateAt the time of writing (early October) the 3-year case list includes 1269 people with type 1 diabetes from Beijing and 481 people for Shantou, a total of 1750. In addition, two hundred and twenty people with T1D or their parents participated in face-to-face interviews in Beijing and 183 in Shantou, a total of 403.Practical preliminary conclusionsKey implementation considerations were identified early in the project. Project success is dependent on strong local partnerships with local opinion leaders and key officials. It is important that a physician is the first point of contact to build the case list and recruit participants. July, August and January are peak months for recruiting school-age children in the Children's Hospital as this is school vacation period when they are more likely to attend clinics.