| Objective.To explore the information needs of patients with IBD,to establish a need-oriented information support platform,by which continue to provide disease-related information for IBD patients,and to explore the effect of continuous information supporting on IBD patients in disease control and quality of life.Then finally to explore a suitable information support pathway for IBD patients in China.Method.1.Construction of information support platform for IBD: Twenty patients with IBD were interviewed.The data were collected by method of phenomenological analysis,to explore the information needs of patients.Then an information needs questionnaire for IBD patients was constructed.A cross-sectional survey was carried out,to explore the information needs of IBD patients with different characteristics.A total of 211 IBD patients were investigated.An IBD information support platform was builded based on the screening results.Pre-test and evaluate the feasibility of the platform.2.An Intervention study for IBD information support platform:Conduct a prospective,controlled study about the platform.A total of 102 subjects were included in the intervention group and the control group.The control group was given routine disease health education.The intervention group provided information support interventions by the information support platform in addition.The intervention time was 6 months.Knowledge Questionnaire,Morisky medication compliance questionnaire,Chronic Disease Self-efficacy Questionnaire,Inflammatory bowel disease questionnaire were used as the main evaluation tool,and the intervention effect was evaluated at 3 months and 6 months after the intervention.All data was entered SPSS20.0 for statistics and analysis.Result.1.Construction of information support platform for IBD The results of qualitative interviews show that patients are difficult to obtain reliable,adequate and practical information,a wide range of information was needed.Quantitative survey results show that the information needs of the research object are at a high level.The age and disease activity were the main influencing factors of the total demand of information,patients with different characteristics have different information needs.twenty-one IBD patients were recruited.Participants were permitted to register and log in the flatform.A 6-week trail of the flatform usability was conduct.,The flatform is feasible and well accepted.2.An Intervention study for IBD information support platform Before the intervention,the basic data of the control group and the intervention group were tested and there was no statistical difference.Intervention at 3 months and 6 months results showed: In terms of disease knowledge questionnaire scores,Self-efficacy questionnaire score,the quality of life total scores and in Intestinal symptoms,affective function,social function dimensions,the intervention group were significantly higher than the control group(P<0.05);in the disease activity the intervention group was significantly lower than the control group(P < 0.05);Patients with medication compliance were higher in the intervention group than in the control group but no significant difference(P>0.05).Conclusion.Patients with information on all aspects of the disease are strongly demanded,Especially in self-managing information.patients of different characteristics have different information needs.Effective information support should be convenient,accessible,close to the people,professional,accurate and targeted features.The IBD information support platform established by this study has a good feasibility.The platform can be used in IBD patients to improve the disease cognition,disease activity control and quality of life.The platform has a good clinical value. |
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