Care delivery and self‐management strategies for children with epilepsy
Abstract
This is a protocol for a Cochrane Review (Intervention). The objectives are as follows:
(1) To compare the effectiveness of any specialised or dedicated team or individual for the care of epilepsy patients whether based:
(a) in hospital e.g. a specialist epilepsy clinic;
(b) in the community e.g. a specialist pharmacist;
(c) in general practice e.g. a specialist epilepsy nurse;
(d) elsewhere e.g. social worker, the voluntary sector;
(e) as a care network combining any of these elements.
(2) To compare the effectiveness of standard care e.g. in a general neurology outpatient clinic, usual in‐patient, out‐patient or General Practitioner (GP) care without specialised or dedicated input.
Background
In the developed world, epilepsy is the most common serious neurological condition after stroke, with a 0.5% point prevalence. For any individual there is a two to three per cent lifetime risk of an epilepsy diagnosis.
Epilepsy care has been criticised as having limited impact by not fully addressing all the health needs of people with epilepsy. It has also been suggested that current epilepsy care leads to reduced patient compliance to agreed care plans (Betts 1992). Various models of service provision have been developed in response to perceived deficiencies in the quality of care, for example, specialist epilepsy out‐patient clinics, nurse‐based liaison services between primary (GP), secondary/tertiary (hospital‐based) care and specialist epilepsy multi‐disciplinary community teams, including input from social care or the voluntary sector. These services may include specialist clinics for specific groups such as pregnant women or teenagers or combine many elements in multi‐disciplinary clinical networks.
These models of care may have advantages over the management of people in general care. In the latter case, access to professionals with specialist training in epilepsy is limited. Care involving professionals with specialist training in epilepsy may improve the quality of care, promote more systematic multi‐disciplinary follow up of individuals and enhance communication between professionals, patients and other services. On the other hand, patients may benefit from non‐specialist services in terms of shorter waiting times and improved continuity of care as a small number of professionals are involved.
The aim of this work is to systematically review the evidence from studies investigating the effectiveness of these service models compared to non‐specialist services.
Objectives
(1) To compare the effectiveness of any specialised or dedicated team or individual for the care of epilepsy patients whether based:
(a) in hospital e.g. a specialist epilepsy clinic;
(b) in the community e.g. a specialist pharmacist;
(c) in general practice e.g. a specialist epilepsy nurse;
(d) elsewhere e.g. social worker, the voluntary sector;
(e) as a care network combining any of these elements.
(2) To compare the effectiveness of standard care e.g. in a general neurology outpatient clinic, usual in‐patient, out‐patient or General Practitioner (GP) care without specialised or dedicated input.
Methods
Criteria for considering studies for this review
Types of studies
All randomised controlled, controlled or matched trials, cohort or other prospective studies with a control group or time series studies.
Types of participants
Anyone with any diagnosis of new or recurrent epilepsy or non‐epileptic seizure under 18 years of age.
Types of interventions
Any specialised or dedicated team or individual for the care of epilepsy patients whether based:
(a) in hospital e.g. a specialist epilepsy clinic;
(b) in the community e.g. a specialist pharmacist;
(c) in general practice e.g. a specialist epilepsy nurse;
(d) elsewhere e.g. social worker, the voluntary sector;
(e) as a care network combining any of these elements.
Types of outcome measures
The primary outcomes to be considered are:
(a) seizure frequency and severity;
(b) appropriateness and volume of medication prescribed (including evidence of drug toxicity);
(c) patients' reported knowledge of information and advice received from professionals;
(d) patients' reports of health and quality of life (including side‐effects of medication);
(e) objective measures of general health status,
(f) objective measures of social or psychological functioning (including the number of days spent on sick leave/absence from school and employment status);
(f) costs of care or treatment.
Particular emphasis will be given to studies that report on outcomes measured over a longer time period and at regular intervals (at least every six months and for at least two years). All outcome measures will be assessed for reliability and validity. If measures are misused (e.g. adults scales used on children) their effect on study results will be investigated in a sensitivity analysis.
Search methods for identification of studies
We will search the following databases using the following search strategies.
(1) Cochrane Central Register of Controlled Trials
1. explode "EPILEPSY"/ all subheadings
2. EPILEP*
3. #1 or #2
4. explode "PROGRAM‐EVALUATION"/ all subheadings
5. explode "DELIVERY‐OF‐HEALTH‐CARE"/ all subheadings
6. #4 or #5
7. #3 and #6
8. explode "AMBULATORY‐CARE"/ all subheadings
9. #3 and #8
10. EPILEP*
11. CENTRE*
12. EPILEP* near4 (CENTRE* in TI,AB)
13. EPILEP*
14. CENTER*
15. EPILEP* near4 (CENTER* in TI, AB)
16. EPILEP*
17. SPECIALIST*
18. EPILEP* near3 SPECIALIST*
19. EPILEP*
20. NURS*
21. EPILEP* near2 (NURS* in TI,AB)
22. explode "OUTCOME‐AND‐PROCESS‐ASSESSMENT‐(HEALTH‐CARE)"/ all subheadings
23. #22 and #3
24. #7 or #9 or #12 or #15 or #18 or #21 or #23
(2) MEDLINE (from January 1966)
1 exp EPILEPSY
2 epilep$
3 1 or 2
4 exp Program Evaluation/
5 exp Delivery of Health Care/
6 4 or 5
7 3 and 6
8 exp Ambulatory Care/
9 3 and 8
10 epilep$
11 centre$
12 (epilep$ adj4 centre$).ab,ti.
13 epilep$
14 center$
15 (epilep$ adj4 centr‐er$).ab,ti.
16 epilep$
17 specialist$
18 (epilep$ adj3 specialist$).ab,ti.
19 epilep$
20 nurs$
21 (epilep$ adj2 nurs$).ab,ti.
22 exp "Outcome Assessment (Health Care)"/
23 22 and 3
24 7 or 9 or 12 or 15 or 18 or 21 or 23
(3) EMBASE (from 1988)
1 exp Epilepsy/
2 epilep$
3 1 or 2
4 exp Ambulatory Care/
5 exp Institutional Care/
6 exp Community Care/
7 exp Health Care Delivery/
8 *Outcomes Research/
9 (program$ adj2 evaluat$)
10 4 or 5 or 6 or 7 or 8 or 9
11 3 and 10
12 (center$ or centre$)
13 nurs$
14 specialist$
15 (epilep$ adj4 (centre$ or center$))
16 (epilep$ adj3 nurs$)
17 (epilep$ adj3 specialist$)
18 11 or 15 or 16 or 17
(4) PsycINFO (from 1996)
#10 #1 and #9
#9 #2 or #3 or #4 or #5 or #6 or #7 or #8
#8 specialist*
#7 nurs*
#6 centre* or center*
#5 treatment effectiveness evaluation
#4 treatment outcome*
#3 health care delivery
#2 ambulatory care
#1 epilep*
(5) CINAHL (using Ovid) (from July 2002)
1. exp EPILEPSY/
2. epilep$.mp.
3. 1 or 2
4. exp Ambulatory Care/
5. exp Health Care Delivery/
6. exp Program Evaluation/
7. exp "Outcomes (Health Care)"/
8. (centre$ or center$).mp.
9. nurs$.mp.
10. specialist$.mp.
11. (epilep$ adj4 (centre$ or center$)).mp.
12. (epilep$ adj3 nurs$).mp.
13. (epilep$ adj3 specialist$).mp.
14. 4 or 5 or 6 or 7
15. 3 and 14
16. 11 or 12 or 13 or 15
Finally we will contact experts in the field to seek information on unpublished and ongoing studies.
Data collection and analysis
Selection of papers
Two review authors (one with specialist knowledge of epilepsy (BL) and one without (PB)), will independently select articles. Results will be compared and disagreements resolved by discussion.
Data extraction and quality assessment
The same review authors will extract data and assess quality of included studies based on explicit criteria used by The Cochrane Effective Practice and Organisation of Care (EPOC) Group (http://www.epoc.uottawa.ca/checklist2002.doc). Any disagreements will be resolved by discussion. If reports provide inadequate information, we will contact authors for further information.
Data analysis
Clinical heterogeneity between studies will be assessed by reviewing the differences across trials. An I‐squared test for heterogeneity will be used to assess statistical heterogeneity if appropriate. If results show heterogeneity (P > 0.05), the cause will be investigated. If heterogeneity is seen to be important, results will not be combined in a meta‐analysis.
If studies are of a suitable quality and there are no important reasons for clinical or statistical heterogeneity their results will be combined in a meta‐analysis, using (standardised) weighted mean differences for continuous variables and relative risks (including Mantel Haenzsel analysis) for dichotomous variables using a random and fixed‐effect model.
