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Tytuł: Acceptance of the disease and its determinants in patients with amyotrophic lateral sclerosis
Abstrakt:
INTRODUCTION. Acceptance of the disease is one of the most important indicators of the patient's adaptation to the situation changed by the disease. Amyotrophic lateral sclerosis is a disease with a very unfavorable prognosis, and the progressive neurodegenerative process leads to full disability and dependence on third parties and medical equipment. Accepting such a severe disease is not easy and may be associated with many factors that may determine the level of acceptance of the disease. OBJECTIVE. The aim of the study was to assess the level of acceptance and its determinants in patients with amyotrophic lateral sclerosis. MATERIAL AND METHODS. The study involved 64 patients diagnosed with amyotrophic lateral sclerosis treated at the Neurological Outpatient Clinic and at the Clinical Department of the Neurology Clinic of the University Hospital in Krakow. The study was conducted with the consent of the Bioethics Committee of the Jagiellonian University in the period from December 7, 2018 to October 31, 2020. The study used the method of a diagnostic survey. An original questionnaire and standardized research tools were used to collect the data: the Acceptance of Illness Scale (AIS), the Dispositional Optimism Scale / Life Orientation Test (LOT-R; Life Orientation Test), the Generalized Self-Efficacy Scale (GSES; Generalized Self-Efficasy Scale), two subscales from the Ber ; lin Social Support Scales (BSSS), Hospital Anxiety and Depression Scale (HADS-M; Hospital Anxiety and Depression Scale-Modified Version), amyotrophic lateral sclerosis functional rating scale (ALSFRS; Amyotrophic Lateral Sclerosis Functional Rating Scale) and the Barthel scale. The results were analyzed using the STATISTICA 13.3 PL package (StatSoft, PL). Quantitative variables were presented in the form of arithmetic mean ( ), standard deviation (SD), minimum (Min), maximum (Max), median (Me). Qualitative variables were presented as count (n) and frequency (%). The distribution of quantitative variables was assessed using the Shapiro-Wilk and Kołmogorow-Smirnow tests, and the equality of group variances using the Levene test. The Mann-Whitney U test was used to assess the significance of differences between the two groups. The non-parametric equivalent of the one-way analysis of variance – the Kruskal-Wallis test and appropriate post-hoc tests were used to analyze the differences between the mean values for the three and more compared ones. In the case of correlation analysis, the Spearman's rank correlation coefficient was calculated. In all analyzes, the effects for which the probability value p was lower than the adopted significance level α = 0.05 (p < 0.05) were considered significant. RESULTS. The subjects diagnosed with amyotrophic lateral sclerosis presented a low lev ; el of disease acceptance. The mean AIS score in the study group was 18.33 points. Among the clinical variables, only weight loss as the first symptom of the disease (p = 0.025), use of a wheelchair (p = 0.007) and impairment of manual activities as a symptom hindering daily functioning (p = 0.039) showed a statistically significant effect on the acceptance of the disease. The remaining clinical variables, i.e. the time of illness, diet, functioning of the respiratory system, comorbidities and other first symptoms and symptoms currently hindering everyday functioning, did not have a significant impact on the acceptance of the disease in the study group. Personal resources, i.e. the level of self-efficacy (p = 0.017) and the level of dispositional optimism (p = 0.043) as well as the severity of anxiety (p = 0.013) and depression (p = 0.000), the degree of functional efficiency (p = 0.036) and the range of independence of the respondents (p = 0.000) had a significant impact on the acceptance of the disease in this group of patients. Social support and sociodemographic factors, with the exception of social and living conditions (p = 0.038), did not affect the acceptance of the disease among patients with amyotrophic lateral sclerosis. CONCLUSIONS. The studied patients with amyotrophic lateral sclerosis have great difficulties in accepting their own disease. The low level of diseas ; e acceptance in this group indicates problems in adapting to the constraints imposed by the disease. Acceptance in this group of respondents is conditioned by clinical variables such as: the presence of weight loss, the use of a wheelchair and impairment of manual activities as well as personal resources, i.e. the level of dispositional optimism and the level of self-efficacy, the severity of anxiety and depression, functional status and the scope of independence, and social and living conditions. Due to the low level of acceptance of the disease by ALS patients, efforts should be made to strengthen psychological interventions and care activities in order to improve adaptation to functioning with the disease. It is also postulated that further research is needed, which may help identify other factors affecting the acceptance of the disease among patients with ALS.
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choroby narządów ruchu ; neurologia
Instytucja nadająca tytuł:
Rada Dyscypliny Nauki o zdrowiu
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Data ostatniej modyfikacji:
15 maj 2024
Data dodania obiektu:
15 maj 2024
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http://dl.cm-uj.krakow.pl:8080/publication/5109
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| Nazwa wydania | Data |
|---|---|
| ZB-137580 | 15 maj 2024 |
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