| Background:Idiopathic inflammatory demyelinating disease of the central nervous system is a kind of autoimmune disease, which is characterized by CNS inflammatory demyelinating lesions, mainly including:multiple sclerosis (MS), neuromyelitis optica (NMO), clinically isolated syndrome (CIS), acute transverse myelitis (ATM), acute disseminated encephalomyelitis (ADEM) and Balo concentric sclerosis (BCS), etc., among them the most common is MS, NMO and CIS.In the present, the domestic large sample epidemiological data of patients with ⅡDDs are very scarce, and most Clinical guides refer to the abroad, there is not a series of guidelines to diagnosis and treatment for Chinese people. Therefore, we decided to establish an imperative clinical database of IIDDs.In addition, ⅡDDs is easy to relapse and progress, and can lead to irreversible nerve injury, with highly disabling, it always brought on physical and psychological damage, social function impairment and heavy economic burden, influencing the patient’s quality of life severely. The overall goal of treatment should be to improve the patient’s physical and mental health and protect its social function. So it is necessary to bring the evaluation of quality of life into the ⅡDDs research. Objective:1. To establish clinical database of idiopathic inflammatory demyelinating disease of the central nervous system (ⅡDDs), and provide adequate information of reference for clinical and basic research on all kinds of ⅡDDs in the future.2. To evaluate the quality of life of patients with different types of ⅡDDs, observe the correlation between patients’age, gender, disease duration, EDSS score and quality of life. Through overall analyzing, to find out the related factors which affect the quality of life, thus provide guiding basis for ⅡDDs patients’comprehensive rehabilitation.3. To observe the QOL of MS patients before and after treatment with IFNβ-1b.Methods:1. We collected the clinical data about ⅡDDs patients from January2007to February2014in xiangya hospital of central south university, including patients’ basic situation, laboratory examination, imaging data and treatment, etc.), set up a computer system management of the clinical database, and summarize classification of ⅡDDs patients, the proportion of gender, age, course of diseases and clinical symptoms, etc.2.101different types of patients were selected from the above ⅡDDs database between April2013and February2014, after admission, there were two experienced doctors using the MSQOL-54, EDSS score, HAMA and HAMD scale to evaluation. Then we analyze the correlation between age, course, EDSS score, gender, education background and the quality of life, and find the related factors affecting life quality of patients. 3. The quality of life of13MS patients treated with IFNβ-1b in Xiangya Hospital between March2013and September2012was assessed by using the MSQOL-54, and EDSS, HAMA, HAMD score were also obtained at baseline and at months1,3,6,9and12.Results:1. ⅡDDs clinical database has been established, which including929cases of patients, among them320MS patients, accounting for34.5%;129NMO patients, accounting for13.9%,94CIS cases, accounting for10.1%;83ATM cases, accounting for8.9%;24ADEM cases (2.6%), the remaining279cases are those that can not be classified, accounting for30.0%. Our database information keeps growing.2. Between MS group, NMO, CIS, other IIDDs group and normal control group, the difference of quality of life was statistically significant (P<0.05), the quality of life scores were lower than that of normal control group, the difference was statistically significant (P<0.05). MS group, NMO group, CIS group and other IIDDs group has no obvious difference in most areas of life quality, that is role limitations due to physical problems, role limitations due to emotional problems, emotional well-being, energy, health perceptions, cognitive function, health distress and overall quality of life (P=0.430; P=0.209; P=0.846; P=0.660; P=0.305; P=0.343; P=0.409; P=0.612), only scores of several fields in NMO group are lower than other groups.3. In all IIDDs groups, EDSS, HAMA and HAMD score nega the life quality of different IIDDs patients and negatively correlated with the quality of life, individuals’ quality of life negatively correlated with age. The disease course, gender and education background made less difference on the QOL score (P>0.05).4. QOL did not change significantly during the one year follow-up, as well as EDSS, HAMA, HAMD scores(P>0.05).Conclusions:1. Successfully established clinical database of Idiopathic inflammatory demyelinating disease of the central nervous system patients in our hospital.2. The various IIDDs patients have a low quality of life compared with normal control group, most IIDDs patients have higher anxiety and depression scores, the quality of life, and anxiety, depression scores in different patients also have no obvious difference, difference exist only in several fields.3. The main factors influencing the QOL of IIDDs patients are EDSS score, anxiety, depression and age, while the course of disease, gender, education background and QOL have no obvious relationship.4. Our findings suggest that IFNβ-1b therapy maybe has no impact on QOL of MS patients in the short time. |
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