Study On Evaluation Index System For Diagnosis And Treatment Collaboration For Rare Diseases From The Perspective Of Medical Institutions On Rainbow Model

Objective: Based on the actual situation of rare disease diagnosis and treatment collaboration of medical institutions in the National collaboration network for the diagnosis and treatment of rare disease(hereinafter referred to as "the collaboration network"),a theoretical analysis model for rare disease diagnosis and treatment collaboration evaluation is constructed.And based on this model,establish an evaluation index system for rare disease diagnosis and treatment collaboration from the perspective of medical institutions within the collaboration network,providing scientific basis for evaluating and promoting rare disease diagnosis and treatment collaboration.Methods: First,through literature research and semi-structured interviews,understood the important contents and core elements collaboration and preliminary index evaluation framework of rare disease diagnosis and treatment collaboration system from the perspective of medical institutions.Then,two rounds of expert consultation were conducted to revise and improve the index evaluation framework so as to form a complete index evaluation system.Finally,the analytic hierarchy process was used to construct the index judgment matrix,and experts were invited to rate the relative importance of each level of indicators,so that the weighting scheme of each level of indicators was determined.Results: The evaluation system of rare disease diagnosis and treatment collaboration in medical institutions based on rainbow model was constructed,including six primary indicators(system collaboration,organizational collaboration,professional collaboration,clinical collaboration,functional collaboration and normative collaboration),18 secondary indicators and 43 tertiary indicators.In the two rounds of expert consultation,the effective response rate of experts is 100%,the total average score of the degree of familiarity(Cs)is 0.80,the total average score of the basis for the judging indicators(Ca)is 0.70,and the authority degree of expert opinion(Cr)is 0.75.In the second round of expert consultation,the coordination coefficient W of the importance and feasibility of each index was 0.334 and 0.45 respectively(p<0.05),which was increased compared with the first round.After two rounds of expert consultation,the comprehensive score of each index is greater than 3.5,and the coefficient of variation is less than 0.25.The weight distribution scheme of indicators at all levels is determined through analytic hierarchy process.The six first level indicators with high to low weight are system collaboration(0.2421),organizational collaboration(0.2297),professional collaboration(0.2122),clinical collaboration(0.1431),functional collaboration(0.1102)and normative collaboration(0.0627).Conclusion: Under the guidance of rainbow model theory,using the methods of literature research,semi-structured interview and expert consultation,this study established the evaluation system of rare disease diagnosis and treatment collaboration indicators of medical institutions from the perspective of medical institutions in the collaboration network,and determined the weight distribution scheme of indicators at all levels through analytic hierarchy process.The index evaluation system is scientific and reliable,which provides a reference for promoting the improvement of the rare disease diagnosis and treatment collaboration mechanism of medical institutions in the cooperation network.