{"title":"多发性硬化症患者的生活质量","authors":"G. Franek, Marzena Bieniak, A. Cieślik","doi":"10.15225/PNN.2019.8.3.1","DOIUrl":null,"url":null,"abstract":"Introduction. Multiple sclerosis (MS) is an incurable demyelinating disease of the central nervous system (c.n.s.). The chronic nature of this disease causes deterioration of the physical, mental, emotional and social condition of patients, which significantly reduces their quality of life. Aim. The aim of the study was to determine the quality of life of patients with multiple sclerosis. Material and Methods. The study involved 100 patients with multiple sclerosis, associated in support groups operating in the Silesian voivodeship. Among the respondents were 77 women and 23 men. The FAMS questionnaire — version 4 (Functional Assessment of Multiple Sclerosis Quality of Life Instrument) was chosen to measure the quality of life of patients with multiple sclerosis. The obtained research material was subjected to a statistical analysis, using the statistical package STATISTICA v12 for calculations. In order to calculate the variables, the following measures were used: arithmetic mean, standard deviation, coefficient of variation, asymmetry coefficient, kurtosis coefficient, Person linear correlation coefficient, Spearman rank correlation coefficient. Results. The average results of all subscales of the FAMS questionnaire-version 4 in the examined group reached the value of 111.1 points; that is, a satisfactory level (65% of all respondents), in the absence of bad assessments, and 35% of good grades. The result is at the second level of quality of life, in the numerical range of 58–117 points. The lowest scores were recorded in the “Mobility” subscale (14.39 points), and the highest in “Other ailments” (36.77 points). Strong correlations were found between the FAMS score and individual subscales. As the subscale score increased, the FAMS score increased, and the higher the score, the better the quality of life of MS patients. The higher the respondent’s age, the lower the FAMS results, while the one-way treatment process — either pharmacology or rehabilitation — does not improve the quality of life, only integrated actions increase the quality of life of patients with MS. In the case of a form of the disease — a primary progressive and primary progressive form with exacerbations affect the quality of life of patients with MS. Conclusions. Most MS patients assessed their quality of life as satisfactory, in the absence of bad and with one-third of good scores. The existence of links between the FAMS results and all subscales indicates that the higher the subscales rated, the higher the FAMS result, i.e. the better quality of life of MS patients. Gender does not determine the quality of life of the respondents, while age, the form of the disease and the type of treatment affect the quality of life. (JNNN 2019;8(3):95–101) Key Words: multiple sclerosis, quality of life, demyelinating disease","PeriodicalId":22776,"journal":{"name":"The Journal of Neurological and Neurosurgical Nursing","volume":"4 16","pages":""},"PeriodicalIF":0.0000,"publicationDate":"2019-04-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"11","resultStr":"{\"title\":\"Quality of Life in Patients with Multiple Sclerosis\",\"authors\":\"G. Franek, Marzena Bieniak, A. Cieślik\",\"doi\":\"10.15225/PNN.2019.8.3.1\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"Introduction. Multiple sclerosis (MS) is an incurable demyelinating disease of the central nervous system (c.n.s.). The chronic nature of this disease causes deterioration of the physical, mental, emotional and social condition of patients, which significantly reduces their quality of life. Aim. The aim of the study was to determine the quality of life of patients with multiple sclerosis. Material and Methods. The study involved 100 patients with multiple sclerosis, associated in support groups operating in the Silesian voivodeship. Among the respondents were 77 women and 23 men. The FAMS questionnaire — version 4 (Functional Assessment of Multiple Sclerosis Quality of Life Instrument) was chosen to measure the quality of life of patients with multiple sclerosis. The obtained research material was subjected to a statistical analysis, using the statistical package STATISTICA v12 for calculations. In order to calculate the variables, the following measures were used: arithmetic mean, standard deviation, coefficient of variation, asymmetry coefficient, kurtosis coefficient, Person linear correlation coefficient, Spearman rank correlation coefficient. Results. The average results of all subscales of the FAMS questionnaire-version 4 in the examined group reached the value of 111.1 points; that is, a satisfactory level (65% of all respondents), in the absence of bad assessments, and 35% of good grades. The result is at the second level of quality of life, in the numerical range of 58–117 points. The lowest scores were recorded in the “Mobility” subscale (14.39 points), and the highest in “Other ailments” (36.77 points). Strong correlations were found between the FAMS score and individual subscales. As the subscale score increased, the FAMS score increased, and the higher the score, the better the quality of life of MS patients. The higher the respondent’s age, the lower the FAMS results, while the one-way treatment process — either pharmacology or rehabilitation — does not improve the quality of life, only integrated actions increase the quality of life of patients with MS. In the case of a form of the disease — a primary progressive and primary progressive form with exacerbations affect the quality of life of patients with MS. Conclusions. Most MS patients assessed their quality of life as satisfactory, in the absence of bad and with one-third of good scores. The existence of links between the FAMS results and all subscales indicates that the higher the subscales rated, the higher the FAMS result, i.e. the better quality of life of MS patients. Gender does not determine the quality of life of the respondents, while age, the form of the disease and the type of treatment affect the quality of life. (JNNN 2019;8(3):95–101) Key Words: multiple sclerosis, quality of life, demyelinating disease\",\"PeriodicalId\":22776,\"journal\":{\"name\":\"The Journal of Neurological and Neurosurgical Nursing\",\"volume\":\"4 16\",\"pages\":\"\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2019-04-19\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"11\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"The Journal of Neurological and Neurosurgical Nursing\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.15225/PNN.2019.8.3.1\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"The Journal of Neurological and Neurosurgical Nursing","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.15225/PNN.2019.8.3.1","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
Quality of Life in Patients with Multiple Sclerosis
Introduction. Multiple sclerosis (MS) is an incurable demyelinating disease of the central nervous system (c.n.s.). The chronic nature of this disease causes deterioration of the physical, mental, emotional and social condition of patients, which significantly reduces their quality of life. Aim. The aim of the study was to determine the quality of life of patients with multiple sclerosis. Material and Methods. The study involved 100 patients with multiple sclerosis, associated in support groups operating in the Silesian voivodeship. Among the respondents were 77 women and 23 men. The FAMS questionnaire — version 4 (Functional Assessment of Multiple Sclerosis Quality of Life Instrument) was chosen to measure the quality of life of patients with multiple sclerosis. The obtained research material was subjected to a statistical analysis, using the statistical package STATISTICA v12 for calculations. In order to calculate the variables, the following measures were used: arithmetic mean, standard deviation, coefficient of variation, asymmetry coefficient, kurtosis coefficient, Person linear correlation coefficient, Spearman rank correlation coefficient. Results. The average results of all subscales of the FAMS questionnaire-version 4 in the examined group reached the value of 111.1 points; that is, a satisfactory level (65% of all respondents), in the absence of bad assessments, and 35% of good grades. The result is at the second level of quality of life, in the numerical range of 58–117 points. The lowest scores were recorded in the “Mobility” subscale (14.39 points), and the highest in “Other ailments” (36.77 points). Strong correlations were found between the FAMS score and individual subscales. As the subscale score increased, the FAMS score increased, and the higher the score, the better the quality of life of MS patients. The higher the respondent’s age, the lower the FAMS results, while the one-way treatment process — either pharmacology or rehabilitation — does not improve the quality of life, only integrated actions increase the quality of life of patients with MS. In the case of a form of the disease — a primary progressive and primary progressive form with exacerbations affect the quality of life of patients with MS. Conclusions. Most MS patients assessed their quality of life as satisfactory, in the absence of bad and with one-third of good scores. The existence of links between the FAMS results and all subscales indicates that the higher the subscales rated, the higher the FAMS result, i.e. the better quality of life of MS patients. Gender does not determine the quality of life of the respondents, while age, the form of the disease and the type of treatment affect the quality of life. (JNNN 2019;8(3):95–101) Key Words: multiple sclerosis, quality of life, demyelinating disease