Investigation On The Survival Status Of Patients With Neuromyelitis Optica Spectrum Disorders

Objective:To report in detail the patient's diagnosis and treatment process,symptom,emotions,interpersonal,social,employment and economics,in order to raise clinicians'awareness of the patient's survival status,promote the improvement and perfection of patient treatment and care,and provide evidence for further development of targeted interventions to improve patients'quality of life.Methods:In-depth interviews were conducted with 123 patients who met the 2015 NMOSD diagnostic criteria in our hospital using telephone interviews,face-to-face communication,and a simple questionnaire.The survey content included general information of patients,medical treatment history,emotions,interpersonal,social,employment,economics,exercise habits,disease knowledge,treatment conditions and expectations,dietary habits,follow-up records and extended disability status scale?EDSS?,etc.,The collected data was analyzed descriptively and differentially by SPSS23.0software.Results:1.123 patients with NMOSD were included in this study.The ratio of male to female was 1:5.2,the median EDSS score was 2 points,the median age of the first episode was 38 years old,and the median course of disease was 3 years.A total of 108 patients with a course of not less than 1year were included,the disease course was relapsing-remitting in 72.2%and monophasic in 27.8%of patients.Among the 81 patients with relapsing-remitting disease,26 had an annual recurrence rate of ARR>1,13 had ARR=1,and 42 had ARR<1,with a median ARR of 0.86.81 patients?65.9%?selected immediate consultation after first symptoms.The median delay time of patients without immediate treatment was 30 days.78 patients?63.4%?were not diagnosed at the first consultation,and the median delay for confirmed diagnosis was 6 months,For each relapse,113 patients?91.9%?chose hospital treatment,94 patients?76.42%?took sequential treatment of the disease,in the face of the disease,94 patients?76.42%?had negative emotions.59.56%of the cases were unable to go to work because of the disease,30patients?24.39%?had exercise habits;2.Binary logistic regression analysis showed that there was a difference in gender between the _Aquaporin4?AQP4?positive group and the negative group,OR=4.995,95%CI?1.180,21.153?,P<0.05.Chi-square test analysis showed that there was a significant statistical difference in the initial diagnosis between the onset groups around 2015,X²=17.750,P<0.05,The Mann-Whitney ranking and test analysis showed that there was a significant statistical difference in the median delayed diagnosis of patients who were not immediately diagnosed between the onset groups around 2015?P<0.05?.There were statistical differences in education level between the groups with and without exercise habits,OR=0.177,95%CI?0.067,0.467?,P<0.05.In the multivariate binary logistic regression analysis between groups with and without negative emotions,there was a statistically significant difference in age between the two groups,OR=1.130,95%CI?1.024,1.246?,P<0.05,There was a statistical difference in the number of people who did not go to work due to the impact of disease between the two groups,OR=7.761,95%CI?1.187,50.737?,P<0.05,there was a statistical difference in daily social loss between the two groups,OR=13.511,95%CI?1.041,175.393?,P<0.05.Conclusion:1.Women are dominant in NMOSD,and women are predominant in AQP4 antibody-positive patients.Many patients experience symptoms such as numbness,pain,fatigue,and stiffness/spasm on a daily basis,In addition,the negative emotions,economic stress,social fear,and work restrictions brought about by the disease also place a heavy burden on the patients and their families.2.Compared with patients who had onset before 2015,the diagnosis rate of patients with onset after 2015 was significantly improved,and the delay time for undiagnosed patients was significantly shortened.3.Exercise habits are related to academic qualifications,exercise habits are more inclined to patients with higher education.4.Negative emotions are more common in young patients or patients who cannot work due to illness or patients who cannot participate in social activities.