الفهرس 
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Abstract
Epilepsy is one of the most common chronic neurologic disorders. It is a fine example of a disorder for which cost-effective treatment is available. The cost of epilepsy is not restricted to the patients but also extends to their families. The costs include the direct costs of providing care and services and also indirect costs in terms of lost opportunities and productivity. Epilepsy is a major chronic disease causing profound physical, psychological, and social consequences that can highly impact the patient’s quality of life (QOL).
The present study is a Quasi-Experimental Research in which pretest-posttest design was used to evaluate an educational intervention for epileptic patients attending epilepsy outpatient clinic in Alexandria university hospital.
The present study aimed to:
1. Identify the demographic and clinical characteristics of epilepsy patients attending the Epilepsy outpatient clinic, affiliated to Neuropsychiatry department, in Alexandria University Hospital, Egypt.
2. Assess epilepsy-specific knowledge among epilepsy patients.
3. Design and implement an educational program for improving epilepsy patients’ knowledge and understanding about their epilepsy, its treatment, and psychosocial consequences, improving patients’ coping with the disease, strengthening self-esteem, and supporting patients to become experts in managing their epilepsy.
4. Evaluate the effect of the proposed educational program on the following outcome measures:
• Primary outcome measures
Improve Epilepsy specific knowledge
Patient reported quality of life in Epilepsy
Epilepsy Self-Efficacy and coping with epilepsy (self-management skills)
• Secondary outcome measures
Seizure frequency and severity
Adverse events of anti-epileptic drugs AEDs
Adherence to anti-epileptic drugs AEDs
Contentedness with antiepileptic drug (AED) therapy:
a) Promote tolerability of AED therapy
b) Effectiveness of AED therapy
Psychological distress (depression/anxiety)
Data Collection methods and tools
Several tools for data collection were used. These included:
• A pre-designed generic interviewing questionnaire for all epilepsy patients (Appendix 1) Demographic characteristics (Gender, age, educational level, employment) History and clinical examination and Clinical characteristics.
• Epilepsy Knowledge Scale
• Quality of Life in Epilepsy Inventory-31 (QOLIE-31):
• Epilepsy Self-Efficacy Scale-33 items (ESES)
• The Hospital Anxiety and Depression Scale (HADS)
• Seizure frequency
• Adherence to AED
• Contentedness with AED therapy\
• Side-effect of the Anti-Epileptic Drugs questionnaire (SIDAED).
• Evaluation of the educational program by the participants
The Following Results were obtained:
The posttest group was 183patients (91.5%) who completed the program with DROP out of 17 patients (8.5%).
1. Demographic data :
• The studied group included 59.5 % females and 40.5% males.
• The age the studied patients ranged from 16 to 70 years with a Mean of 29.78± SD years.
• High school education (general and technical) level had the highest percentage 49% followed by elementary education 35.5 % and the least was university education 15.5%.
• 72.5% were unemployed while 27.5% were employed.
• 43% of the patients were married, and 40% were single a small proportion were separated or widow (12.5%and 4.5%) respectively.
2. Clinical characteristics
• Age of onset ranged from 4 to 69 years with a mean of 20.08 ± 13.23 years.
• Duration of illness of studied patients ranged from 1 to 27 with a mean of 9.7 ± 6.86 years.
• Generalized tonic clonic was the most common type of epilepsy (49.5%) followed by focal impaired awareness (31.5%) ,while juvenile myoclonic and temporal lobe were 6% for each.
• Regarding treatment, 31% of patients were on valproate, followed by 28.5% carbamazepine, followed by levetiracetam 28%. A minority of patients reported receiving Oxacarbamzepine (6.5%), Lamotrigine (3.5%) and phenytoin (2.5%).
• The EEG was free in 59% of cases and positive in 41% of cases.
• Imaging findings included 83% of cases were free and 17% were positive.
3. Assessment of studied epileptic patients before intervention
• Epilepsy specific Knowledge percent score ranged from 11.11 – 77.78%, with a mean of 44.28 ± 15.37%.
• The total QOLIE31 score ranged from 35.90 – 63.43 with a mean of 50.05 ± 9.03 .It included seizure worry which ranged from 18.90 – 100.0 with a mean 64.94 ± 24.96 which was the highest among all subdomains, followed by the Energy and fatigue ranged which from 30.0 – 100.0 with a mean 57.65 ± 22.25.
Social Function ranged from 10.0 – 95.0 with a mean 50.92 ± 21.22 which was close to the medication effects and emotional wellbeing.
Medication effects ranged from 0.0 – 100.0 with a mean mean 50.08 ± 31.0.
The emotional wellbeing ranged from 28.0 – 80.0 with a mean 50.96± 12.97.
The lowest two subdomains were The Cognitive function which ranged from 20.0 – 86.60 with a mean 48.25 ± 17.66, and The overall quality of life which ranged from 0.0 – 90.00 with a mean 42.57 ± 29.16.
• The Epilepsy Self-efficacy scale ranged from 28.0 – 150.0 with a mean of 88.27± 18.28.
• Morisky Medication Adherence Scale showed that most patients 93.4% were poorly adherent AEDs and only 6.6% tightly adherent to AEDs.
• The side effects measured by side effects to antiepileptic drugs score ranged from 0.0 – 45.0 with a mean of 17.04 ± 9.32.
• Contentedness with AED therapy was measured through tolerability and effectiveness of antiepileptic drugs tolerability ranged from 1 -4 with a mean of 1.66±1.02 while the effectiveness of antiepileptic drugs ranged from 1-4 with a mean 2.22 ± 0.59.
• The Seizure frequency score revealed that 66.5% of patients had marked reduction of seizures while 25.5%showed slight reduction of seizures 6%no seizures and 2%no reduction of seizures.
• Using the HADS anxiety subscale ranged from 0.0 – 15.0 with a mean 7.14 ± 4.42.
More than half of the epilepsy patients (56.8) % had no anxiety, 22.4 % were abnormal and 22.4% were borderline.
While the depression subscale ranged from 0.0 – 20.0 with a mean 10.09± 5.05.
Almost half of patients 45.9% were depression cases, 31.3% were normal and 23.0%were borderline.
4. Effect of intervention on the different studied parameters
All parameters compared revealed a significant improvement after receiving the educational program.
• The epilepsy specific knowledge percent score increased from 44.02 ± 15.38 % to 68.63 ± 8.82%.
• QOLIE 31 total score mean increased from 50.05 ± 9.30to 53.43 ± 8.38 and this increase was statistically significant p <0.001.
• The seizure worry subscale score mean increased from 64.94 ± 24.96 to 66.58 ± 24.31, Overall subscale mean score increased from 42.57 ± 29.16 to 47.64 ± 24.63, Emotional wellbeing mean score increased from 50.69 ± 12.97 to 52.60 ± 12.81, The energy and fatigue score mean increased from 57.65 ± 22.25 to 59.32 ± 21.49, cognitive functioning mean score increased from 48.25 ± 17.66 to 50.48 ± 16.73, medication effects mean score increased from 50.08 ± 31.0 to 53.14 ± 28.60, social function mean score increased 50.92 ± 21.22to 53.35 ± 19.89.
• Epilepsy self-efficacy scale mean score increased from 88.81 ± 18.76 to 154.60 ± 27.77and this increase was statistically significant, p <0.001.
• HADS anxiety mean score decreased from 7.14 ± 4.42 to 6.72 ± 3.797. HADS depression mean score decreased from 10.09 ± 5.05 to 9.36 ± 4.07and this decrease was statistically insignificant p =0.796.
• Morisky Medication Adherence Scale mean score decreased from2.36 ± 1.20 to 1.04 ± 0.59 and this decrease was statistically significant p <0.001.
• Mean side effects scale score decreased from 17.04 ± 9.32 to 15.78 ± 8.23 and this decrease was statistically significant p <0.001.
• Mean seizure frequency decreased from 2.59 ± 1.63 to 2.11 ± 1.20 and this decrease was statistically significant p <0.001.
• Mean tolerability scale to antiepileptic drugs decreased from 1.66 ± 1.02 to 1.53 ± 0.98 and this decrease was statistically significant p <0.001.
• Mean effectiveness of antiepileptic drugs decreased from 2.22 ± 0.59to 2.13 ± 0.58 and this decrease was statistically significant p <0.001.
5. Factors affecting quality of life
• Females had lower overall quality of life and this was statistically significant.
• Knowledge percent score was positively correlated with the QOLIE31 in the before intervention group.
• Tolerability AEDs also showed negative correlation with total qoli31 score.
• After the intervention higher anxiety and depression scores had lower total QOLIE31 score.
• Patients with lower tolerability and effectiveness of AEDs had lower QOLIE.
• Higher seizure frequency was associated with lower QOL and this was statistically significant.
• Longer duration of illness was associated with higher quality of life but this was statistically insignificant.