الفهرس 
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Abstract
Summary
Multiple sclerosis is a chronic, progressive, immune-mediated disorder that affects CNS and the most common cause of non-traumatic neurological disability in young adults. The progression of MS is not linear, and it is not yet clear what causes a benign course of disease in some patients and a rapid, debilitating course in others (Malarvizhi & Gugan, 2019). In addition to physical impairment and pain, people with MS often experience increased fatigue, elimination problems, sensory problems, cognitive difficulties, poor sleep quality, chronic stress, mood disturbances, lowered QOL and resilience, and reduced well-being (Kołtuniuk et al., 2021).
The study was aimed to evaluate the effect of educational guideline on self-management and clinical outcomes for patients with multiple sclerosis through the following:
1- Assessing patients’ knowledge and self-management regarding multiple sclerosis pre implementation of educational guideline.
2- Assessing patients’ clinical outcomes regarding multiple sclerosis pre implementation of educational guideline.
3- Developing and implementing educational guideline based on patients’ assessment.
4- Evaluating the effect of educational guideline on knowledge and self- management and clinical outcomes for patients with multiple sclerosis post implementation of educational guideline.
Research hypotheses
The current study hypothesized that:
1- Implementation of educational guideline will have a positive effect on knowledge for patients with multiple sclerosis.
2- Implementation of educational guideline will have a positive effect on self-management for patients with multiple sclerosis.
3- Implementation of educational guideline will have a positive effect on clinical outcomes for patients with multiple sclerosis.
Study Design:
A quasi-experimental design was utilized to conduct this study.
Setting of the study:
The study was conducted at Multiple Sclerosis Outpatient Clinic at Ain Shams University Hospital affiliated to Ain Shams University, Egypt.
Sampling:
Sample type: A purposive sample of 80 patients who visited the above-mentioned setting at the time of data collection. The calculation of sample size done based on power analysis (Suresh & Chandrashekara, 2012).
The sample size was calculated based on:
N×p (1-p)
ـــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــــ{N-1× (d2÷z2)} + p (1- P)}
• Type I error with significant level (α) = 0.05.
• Type II error by power test (1-B) = 95%.
The minimum sample were 80 cases.
Inclusion criteria:
The subjects included in the present study were selected according to the following criteria: adult patients 18 ≤ 65 years old, both genders (male and female), patients with different educational level and able to comprehend instructions, patients who were in clinical remission or after 3 weeks of acute relapse, to avoid the effect of steroids given for treatment of acute relapse, on mood and patients who didn’t receive any educational guideline about self-management and agreed to participate in the study.
Exclusion criteria:
Patients with history of head trauma or CNS disorders other than MS, to avoid overlapping of these disorders with the effect of MS lesion, having drug addiction and patients with psychiatric disorders.
Tools for data collection:
Four tools were used for data collection:
Tool I: Patients’ interviewing questionnaire
This tool was developed by the researcher in Arabic language based on reviewing the related literatures. It included two parts to assess patients’ demographic characteristics and clinical data as the following:
Part (1): Patients’ demographic characteristics assessment:
This part was used to assess demographic characteristics of patients under study. It consisted of eight questions regarding age, gender, marital status, level of education, working status, residence, living condition and monthly income.
Part (2): Patients clinical data assessment:
This part concerned with assessment of patients’ clinical data. It included:
- Present history: It consisted of four closed ended questions regarding time of diagnosis, type of MS, history of relapse and signs of MS.
- Past history: It consisted of three closed ended questions regarding chronic diseases, previous hospitalization and surgical history.
- Family history: It consisted of one closed ended question regarding family history of MS.
- Smoking history: It consisted of two closed ended questions regarding time of starting smoking and passive smoking.
Tool II: Patients’ knowledge assessment tool:
This tool was developed by the researcher in Arabic language based on reviewing the related literatures. It was used to assess patients’ knowledge about MS and written in the form of (yes or no). It was composed of 44 questions grouped under 7 sections.
Tool III: Multiple Sclerosis Self-Management Scale:
It was adapted from Bishop and Frain, (2007) and modified by researcher. It was translated into Arabic language then back translation was done and used to assess patients’ self-management regarding MS. It composed of 95 statements grouped under 6 subscales.
Tool IV: Clinical Outcomes Assessment Questionnaire:
It was concerned with assessment of patients’ clinical outcomes. It was translated into Arabic language and back translation was done and included the following:
B- Modified Fatigue Impact Scale: It was adapted from Mills et al., (2010) and modified by researcher to assess the impact of fatigue on physical, cognitive, and psychosocial functions for patients with MS in the past four weeks. It composed of 21 statements grouped under 3 subscales that included: physical subscale (9 statements), cognitive subscale (10 statements) and psychosocial subscale (2 statements).
B- Pain Effects Scale: It was adapted from Ferreira-Valente et al., (2011) and modified by researcher to assess the pain level and its effect on patients’ mood and behavior in the last four weeks. Six statements were used to assess the effects of pain on mood and behavior.
C- Bladder Control Scale: It was adapted from Marrie and Goldman, (2007) and modified by researcher to assess the bladder control level for patients with MS in the last four weeks. It was composed of 4 statements.
D- Bowel Control Scale: It was adapted from Marrie and Goldman, (2007) and modified by researcher to assess the bowel control level for patients with MS in the last four weeks. It was composed of 5 items.
E- The Multiple Sclerosis Intimacy and Sexuality Questionnaire: It was adapted from Monti et al., (2020) and modified by researcher to evaluate the sexual activity and satisfaction in the last four weeks. It was composed of 15 statements.
F- Impact of Visual Impairment Scale: It was adapted from Pawar et al., (2010) and modified by researcher to assess the impact of visual impairment level on patients with MS in the last four weeks. It was composed of 28 statements grouped under 3 subscales that included: reading and accessing information subscale (9 statements), mobility and independence subscale (11 statements) and emotional well-being subscale (8 statements).
G- Mental Health Inventory: It was adapted from Meybodi et al., (2011) and modified by researcher to assess psychological distress for patients with MS in the last four weeks. It was composed of 18 statements.
The main findings of the present study can be summarized as follows:
- 60.0% of the studied patients their age ranged between 30-<40 years old, the mean ± SD of age was 36.75 ± 5.63 years; females were more prevalent and constituted 68.8% of the studied patients. Regarding educational level, 50.0% of them had secondary level of education. Moreover, more than half of the studied patients were diagnosed with MS from 5-10 years ago with mean ± SD 7.66 ± 3.50. RRMS was more prevalent and constituted 81.3% of the studied patients. Also, 91.3% of them had previous relapses.
- According to total patient’s knowledge about MS, there was improvement in all subscales of patients’ knowledge post implementation of educational guideline. As evidence, 15.0% of them had satisfactory level of total knowledge regarding MS with mean ± SD 20.16 ± 7.95 pre implementation of educational guideline which improved to 88.8% of them with mean ± SD 39.55 ± 6.11 post intervention phase at (P= < 0.01).
- Concerning total self-management practices, there was improvement in all domains of patients’ self-management practices regarding MS post implementation of educational guideline. As evidence, 18.7% of them had satisfactory level of total self-management practices regarding MS with mean ± SD 169.6 ± 42.0 pre implementation of educational guideline which improved to 87.5% of them with mean ± SD 249.2 ± 36.3 post intervention phase at (P= < 0.01).
- Regarding patients’ outcomes, there was a statistically significant improvement in all items of patients’ outcomes post implementation of educational guideline compared to pre intervention phase with a highly statistically significant difference (P < 0.01).
- There was a highly statistically positive correlation between total patients’ self-management and total knowledge, total bladder control, total bowel control and total sexual activity and satisfaction pre implementation of educational guideline at (r= 0.873, r=0.671, r=0.795 and r=0.850, respectively). Also, there was a highly statistically positive correlation between total patients’ self-management and total knowledge, total bladder control, total bowel control and total sexual activity and satisfaction post implementation of educational guideline at (r= 0.922, r=0.788, r=0.739 and r=0.847, respectively).
- There was a highly statistically negative correlation between total patients’ self-management and total impact of fatigue, total pain, total impact of visual impairment and total psychological distress pre implementation of educational guideline at (r= -0.793, r=-0.745, r=-0.815 and r=-0.820, respectively). Also, there was a highly statistically negative correlation between total patients’ self-management and total impact of fatigue, total pain, total impact of visual impairment and total psychological distress post implementation of educational guideline at (r= -0. 892, r=-0. 887, r=-0. 855 and r=-0.815, respectively).
Conclusion
Based on the findings of the current study, it is concluded that: there was a significant improvement in patients’ knowledge and self-management practices regarding MS post implementation of educational guideline. Also, there was a significant reduction in impact of fatigue, pain, visual impairment and psychological distress among the studied patients post implementation of educational guideline. Moreover, there was a significant improvement in patients’ bladder, bowel control, sexual activity and satisfaction post implementation of educational guideline. Hence the aim and hypotheses of the study were achieved.
Recommendation
In the light of the findings of the current study the following recommendations for future research and practice can be suggested:
Self-management guideline should be included in the routine nursing care and rehabilitation program for patients with MS and should be updated periodically in order to enhance their knowledge and self-management practices.
Conducted educational programs that provide the latest information about self-management approach in relation to MS to support patients to manage their disease effectively.
Booklets and brochures containing sufficient knowledge about MS should be printed and kept in clinics and given to patients.
Promoting education of early detection and screening of MS to improve the prognosis.
Establishment of Web site under medical and nursing supervision to provide information about the disease, places of treatment, and psycho-social support. In addition, helping individuals with MS and their families to access available resources.
Implication for Future Research
Further research is needed on a larger probability sample at different settings to generalize the results