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Table 3 Summary table of included Quantitative studies

From: Knowledge and information needs of young people with epilepsy and their parents: Mixed-method systematic review

Reference

Study Design

Research Question

Setting Context

Main Results

Methods/Quality

Other notes

Baker et al 2005 [35]

Quantitative-Matched, controlled study by means of a number of questionnaires

6 questionnaires for all young people:

1. The Rosenberg self-esteem scale

2. The social avoidance and distress scale (SADS)

3. The Birleson Depression scale (BDS)

4. The Leyton Obsessional Inventory (LOI)- child version

5. The Children's Depression Inventory (CDI)

6. The Schonell Reading Test

Additional 2 questionnaires for young people with epilepsy with epilepsy

7. The impact of epilepsy scale

8. Adolescents knowledge of epilepsy questionnaire

n = 75 aged 12-18 years

To investigate the psychological and social impact of epilepsy on young people and to identify to what degree clinical and demographic variables and knowledge of epilepsy could influence psychological functioning

Epilepsy centres

UK

Young people with epilepsy who had more epilepsy knowledge were less depressed

p = 0.039 mean 7(5-9 confidence interval) they also had higher level self esteem

p <0.026 mean 33(31-34 confidence interval) and low social anxiety p = 0.039 mean 7(5-9 confidence interval)

Young people with epilepsy who had low Epilepsy Knowledge were more depressed

p = 0.039 and had low self esteem p = 0.026 mean 11(9-14 confidence interval) and mean 28(27-31 confidence interval) respectively

Mean (95% confidence interval) level of knowledge of epilepsy

Validated questionnaires

Control group

Participants from a specialist centre

 

Kongsaktrakul et al 2006 [43]

A Questionnaire conducted in the epilepsy clinic adopting the following sequence: The personal Data Form, the self-care behavioural scale, The Epilepsy Knowledge Scale, The Epilepsy Self-Efficacy Scale, the Family APGAR Questionnaire, and the Friend APGAR Questionnaire

n = 121 aged 14-21 years

To determine a causal relationship among age, family income, support, epilepsy knowledge, epilepsy self-efficacy and self-care behaviour among young people with epilepsy

Clinics

Thailand

Young people with epilepsy showed:

Improved self-care behaviour p = <0.001

Positive direct effect self-efficacy p = <0.05

Family income positive effect p <0.05

CFI 0.99

Cross sectional design Participants from specialist centres

 

Bell et al 2002 [46]

20 page postal Questionnaire commissioned by Department of Health Clinical Standards Advisory Group (CSAG) about services for people with epilepsy

n = 795 of which:

(n = 13-16)

16-17 years old

(n = 20-21)

18-19 years old

(n = 29-30)

To establish whether women with epilepsy recall being given information on topics relating to childbearing

Home UK

31% (5 out of 16) young girls aged 14-15 years

received information about the interaction between

their Anti-epileptic drug treatment and the oral

Contraceptive pill.

20-35% from 14-17 years and 55%-65% aged

In-between 16-19 years received information.

Teratogenesis of AED

Data could have been better displayed for age ranges

 

Hirfanoglu et al 2009 [43]

Questionnaire

46 items for children

43 items for parents

n = 220 children

n = 77 parents

To evaluate knowledge, perception and attitude towards epilepsy and how this correlates with quality of life and stigma among children with epilepsy and their families

Clinics

Turkey

Adolescents: increased epilepsy knowledge compared to younger children (p = 0.0001, r = 0.294) increased stigma (p = 0.0001, r = 0.256), depression p = 0.0001, r = 0.276) longer duration of seizures equated to negative attitude towards epilepsy p = 0.001, r = 0.223)

Parents- 20% did not inform their children about epilepsy, 42% did not know what to do during a seizure

Researchers differentiated between children and adolescents and demonstrated statistical significance for adolescents in knowledge, stigma and depression

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