- Email: [email protected]
The effect of specially trained epilepsy nurses in primary care: a review
Seizure 2000; 9: 43–46
doi: 10.1053/seiz.1999.0366, available online at http://www.idealibrary.com on
The effect of specially trained epilepsy nurses in primary care: a review LEONE RIDSDALE∗ Reader in General Practice & Consultant Neurologist, Department of Clinical Neurosciences, Guy’s, King’s and St Thomas’s School of Medicine, De Crespigny Park, Denmark Hill, London SE5 8AF, UK The paper describes the evidence on potential effects of specially trained nurses working in primary care for patients with epilepsy. The method used was a search and review of evidence published from 1992 to 1999. It was found that where nurses have been trained in epilepsy care, there is good evidence that it is feasible for them to set up and run clinics in family practice. Where this has been undertaken, there is level I evidence that this is acceptable and satisfactory to patients. Where clinics have been set up in primary care, there is level I evidence that there has been an increase in the information and advice recorded as being provided to patients. Structured checklists may additionally prompt service providers to increase the level of information provided to patients, and this hypothesis is being tested currently. In conclusion, epilepsy nurses can set up clinics for patients in primary care which are well attended, satisfy patients, and which are associated with better recording of advice given. There is little published evidence on outcome as opposed to process measures. Trials with adequate sample size and long-term followup are necessary to identify whether nurse monitoring with advice and counselling can benefit patients in terms of epilepsy self-management in the long run. c 2000 BEA Trading Ltd
Key words: epilepsy; nurse specialist; primary health care; health education; psychology.
INTRODUCTION
them to set up and operate call and recall systems for monitoring patients;
Social scientists1 and self-help groups2 have found that people with epilepsy report that they have been provided with too little information and support for them to manage their condition as well as they would wish. Initial and continuing care for most people with epilepsy in the UK is provided by their family doctor, and this is the source of care they generally prefer3 . Many family doctors report that they lack the time, and sometimes the expertise to manage patients with epilepsy4 . Specialists in the UK see and evaluate patients with new epilepsy who are referred by their family doctor, and they continue to manage about one in four patients who have frequent attacks of epilepsy. In the context of people with epilepsy getting too little information and advice, it has been proposed that some tasks might potentially be undertaken by specially trained nurses5, 6 . Before assessing evidence on the effect of this innovation, the potential tasks that can be performed by nurses need to be identified, and their relationship with family doctors and specialists. The potential tasks that nurses might undertake include: (1) advising on the creation of registers of patients with active epilepsy in primary care, and using ∗ E-mail: [email protected]
1059–1311/00/010043 + 04
$35.00/0
(2) providing advice about the medical and social aspects of epilepsy. The medical aspects of epilepsy, include information about the diagnosis, tests for epilepsy, its causes, prognosis, drug effects and side effects, contraception and pregnancy. The social aspects of lifestyle management include accident prevention, driving, employment, alcohol, social services and self-help groups could also be addressed; (3) counselling, for the life events and difficulties that are a consequence of the condition with the aim of the prevention and management of psychological illness; (4) liaison on behalf of patients with medical professionals and social agencies. In the UK the National Society for Epilepsy and other groups have trained nurses to a higher level so that they can work in association with a group of family practices and/or in conjunction with a specialist in epilepsy care. These nurses have gone on to offer day release courses to nurses in primary care, so that they can set up clinics in family practice just as they have c 2000 BEA Trading Ltd
44
L. Ridsdale
already done for other chronic conditions like asthma and hypertension. A schematic representation of the tasks and roles is provided in Fig. 1. We have investigated and evaluated the potential role of nurses in epilepsy care, and want to place this work in the context of the literature. The aim of this paper is to review the evidence for the effects of epilepsy trained nurses in primary care.
MATERIALS AND METHODS Literature search strategy As the idea of nurses with special epilepsy training is a new one, we made a search of literature published from 1992 to 1999. The strategy was to include all papers which used ‘nurses’ and ‘epilepsy’ in the title or as textwords. The addition of a reference to effectiveness was not required, as it was unlikely that evidence would be found using the combined terms. There is evidence on the effectiveness of special nurses in other conditions which could have been used to make analogies with epilepsy, but they were excluded. Where investigators were known to have undertaken recent work, they were asked for information about unpublished findings and papers which were in press. The databases used were MEDLINE, Psychinfo, EMBASE, the Science Citation Index, the Cochrane database, and CINAHL. Medical Subject Headings (MeSH) were used on MEDLINE, EMBASE and CINAHL. They included ‘nurse practitioners’, ‘nurse clinicians’, ‘hospital nursing staff’, ‘primary nursing care’, and ‘patient care team’. Similar keywords were used on non-MESH databases. The term ‘epilepsy’ was exploded, so that all types of epilepsy would be included. Sackett et al.7 and Griffiths and Feder8 have described criteria and a process for weighing up the value of evidence for clinical practice. The categories are studies: I. based on well-designed, randomized controlled trials, meta-analyses, or systematic reviews, II. based on well-designed cohort or case control studies, III. based on uncontrolled studies or consensus. These criteria were used in evaluating the literature.
RESULTS The literature provided useful information on the role of nurses in epilepsy in four main areas.
1. Advising on the creation of registers of patients with epilepsy with monitoring in primary care In the context of an audit, Taylor and others9 have shown that primary care teams can create registers of their patients with epilepsy and monitor them. In a randomized controlled trial Ridsdale et al.10 have shown that it was feasible for a nurse, with special training and administrative support, to set up a register in six general practices. Of 127 patients offered appointments to see the nurse for advice and counselling about their epilepsy, 106 (83%) attended. Mills et al.11 offered nurse appointments to 283 patients in seven family practices as part of a quasi-experimental trial. One hundred and forty eight (52%) of the patients attended a nurse-run clinic. Thapar12 proposed that a structured approach to care may itself improve the quantity (and quality) of services provided for people with epilepsy. He and his colleagues are testing the effect of a structured checklist in a randomized trial (Thapar personal communication).
2. Advice In the USA Diloro et al.13 surveyed doctors’ and nurses’ perceptions of patients’ need for learning on specific epilepsy-related topics. Nurses rated the importance of patients’ learning needs more highly than doctors on all topics. The authors inferred that nurses may receive greater emphasis in their training on their role as teachers in preparing patients for selfmanagement. Scambler et al.14 found that a group of patients in the UK, who had not seen a nurse for epilepsy, had high expectations of nurses when they compared them with GPs and specialists. Patients who had actually seen a nurse had high satisfaction levels across all domains when compared with GPs and specialists. The evidence supports the hypothesis that when nurses have provided advice, and perhaps more importantly, time, patients have been satisfied with this new role11, 15 . Mills et al.11 found that patients randomized to the nurse intervention were more likely than controls to report never missing taking their anti-epileptic drugs after the intervention. In our trial10 , there was a significant increase in the advice given and recorded on driving, drug compliance, adverse drug effects, alcohol, and self-help groups for patients in the intervention group compared with those in the control group. When patients were interviewed, they particularly appreciated advice given on ‘social’ topics like driving, free prescription availability, safe use of alcohol, and employment services for people with disabilities15 .
Effect of specially trained epilepsy nurses
45
SPECIALIST DOCTOR Diagnosis, intractable seizures and drug withdrawal
AMILY PRACTITIONER resentation, problem differentiation, eferral, management, monitoring nd re-referral
PATIENT
RIMARY CARE NURSE onitoring patients, advice on rug self-management, driving, elf-help groups, alcohol, periodic eview dependent on patient
SPECIALIST NURSE New patient explanation, intractable seizures, teaching practice nurses, liaison
Fig. 1: The team and its potential roles.
3. Counselling Instruments such as the Hospital Anxiety and Depression Rating Scale16 (HAD), have been used in trials of psychological interventions for other disorders. We17 found that patients who reported an attack of epilepsy in the prior 6 months were three times more likely to have depression symptom scores of 8 or more on the HAD scale, than those who reported no recent epileptic attack. This suggests that patients with active epilepsy are at greater risk of depression or borderline depression. A temporal relationship between recent epilepsy attacks and patients’ quality of life, depressive symptoms and felt stigma has been confirmed in other studies18, 19 . Without support, physical and psychological problems may become compounded, with decreasing ability to cope20 . Where nurses with special training are available to a group of family practices in one locality, it is likely that doctors will refer patients who have more difficulty in controlling their epilepsy to the nurses. These people are likely to suffer more emotional symptoms in consequence of their poorly controlled epilepsy. This hypothetical association is supported by descriptive evidence from the North of England. Rogers and Taylor21 reported that since 1988, 122 of 444 (27%) of patients had been referred to nurse specialists from a group of family practices in Doncaster. Amongst patients who had used the nurse liaison service 41 of 111 (37%) had depression scores over 8, while 76 of 296 (26%) of those who had never used the service had high scores (χ 2 = 4.46, P = 0.03). This represents level III evidence that patients referred to nurse specialists are likely not only to have more difficulty controlling their epilepsy, but also to be more severely
affected in terms of their emotional well-being. In a trial we22 found that patients who were randomized to see a nurse had significantly lower depression scores after the intervention. The group that seemed to benefit more were those people who had not had an epilepsy attack recently. This quantitative evidence may be understood better by examining qualitative evidence from a subgroup of patients who were interviewed. They commented on the nurses ability to reduce their fears and anxieties15 . A review by Goldstein23 of the evidence on the effectiveness of psychological interventions for people with poorly controlled epilepsy suggests that when there is a concurrent high level of psychological distress, the care package will need to be much more intensive to have a significant effect. 4. Liaison on behalf of patients with medical, professional and social agencies Rogers and Taylor21 and our own group15 found the nurses liaison role was valued both by patients and doctors. Beneficial roles identified included on the one hand reducing the need for follow-up visits with medical specialists, and on the other hand nurses acting as trouble-shooters providing rapid access to the specialist where it was necessary. So a better match was achieved between needs for different levels of care, and care provided. Where there is more than one specialist nurse working in a locality, as there was in Doncaster, nurses were additionally able to provide emergency advice. An increase in the level and availability of advice such as this might prevent inappropriate use of ambulance, emergency and inpatient services.
46
CONCLUSIONS Where nurses have been trained in epilepsy care, there is level I evidence that it is feasible for them to set up and run clinics in family practice. Where this has been undertaken, there is also level I evidence that this is acceptable and satisfactory to patients. Where clinics have been set up in primary care, there is level I evidence that there has been an increase in the information and advice recorded as being provided to patients. Structured checklists may additionally prompt service providers to increase the level of information provided to patients and this hypothesis is being tested currently. There is level II evidence that patients with poorly controlled epilepsy are at greater risk of a lower quality of life, more symptoms of depression and feelings of stigma. This needs to be acknowledged and planned for if appropriate psychological as well as medical support is to be provided. There is evidence that nurserun clinics may improve the emotional well-being of some patients. These findings need to be tested in other studies. There is level III evidence that nurses with sufficient training and time should monitor all patients with epilepsy annually. Those with poorly controlled epilepsy require more frequent appointments5 . Understanding the needs of people with epilepsy in primary care and testing the effect of new interventions designed to help them is an important and relatively new area of investigation. The evidence reviewed here is tentative. Theories and methods of measuring outcome require further development. Many questions remain unanswered requiring more exploratory and hypothesis testing research.
ACKNOWLEDGEMENTS This review was initially undertaken at the request of Professor S. Shorvon, and formed secondary evidence for a Royal College of Physicians review with guidelines for poorly controlled epilepsy. The author acknowledges this stimulus, and Professor Roger Jones who provided feedback on an earlier draft.
REFERENCES 1. Scambler, G. Epilepsy. London, Routledge, 1989. 2. British Epilepsy Association, Towards a New Understanding. Leeds, British Epilepsy Association, 1990. 3. Ridsdale, L., Robins, D., Fitzgerald, A., Jeffery, S., McGee, L. and the Epilepsy Care Evaluation Group, Epilepsy monitoring and advice: general practitioners’ views, current practice and patients’ preferences. British Journal of General Practice 1996; 46: 11–14. 4. Thapar, A. J., Stott, N., Richens, A. and Kew, M. Attitudes of general practitioners to the care of people with epilepsy. Fam-
L. Ridsdale ily Practice 1998; 15: 437–442. 5. Royal College of Physicians, Institute of Neurology, and the National Society for Epilepsy. Adults with Poorly Controlled Epilepsy. Part 1. Clinical Guidelines for Treatment. Part 2. Practical Tools for Epilepsy Management. London, Royal College of Physicians, 1997. 6. Jain, P., Patterson, V. and Morrow, J. What people with epilepsy want from a hospital clinic. Seizure 1993; 2: 75–78. 7. Sackett, D. L., Richardson, W. S., Rosenberg, W. and Haynes, R. B. Evidence-based Medicine: How to Practice and Teach EBM. Edinburgh, Churchill Livingstone, 1997. 8. Griffiths, C. and Feder, G. An approach to using clinical guidelines. In: Evidence-based Practice in Primary Care (Ed. L. Ridsdale). Edinburgh, Churchill Livingstone, 1998. 9. Taylor, M. P., Readman, S., Hague, B., Boulter, V., Hughes, L. and Howell, S. A district epilepsy service with community based specialist liaison nurses and guidelines for shared care. Seizure 1994; 3: 121–127. 10. Ridsdale, L., Robins, D., Cryer, C., Williams, H. and the Epilepsy Care Evaluation Group, Feasibility and effects of nurse run clinics for patients with epilepsy in general practice: randomized controlled trial. British Medical Journal 1997; 314: 120–122. 11. Mills, N., Bachman, M., Harvey, I., Hine, I. and McGowan, M. The effect of a primary care based epilepsy specialist nurse service on quality of care from the patients’ perspective: quasiexperimental evaluation. Seizure 1998; 6: 1–8. 12. Thapar, A. J. Care of patients with epilepsy in the community: will new initiatives address old problems? British Journal of General Practice 1996; 46: 37–42. 13. Dilorio, C., Manteuffel, B. and Manteuffel, B. Learning needs of persons with epilepsy: a comparison of perceptions of persons with epilepsy, nurses and physicians. Journal of Neuroscience Nursing 1993; 25: 22–29. 14. Scambler, A., Scambler, G., Ridsdale, L. and Robins, D. Towards an evaluation of an epilepsy nurse specialist in primary care. Seizure 1996; 5: 225–258. 15. Ridsdale, L., Morgan, M. and O’Connor, C. Promoting selfcare in epilepsy: the views of patients on the advice they had received from specialists, family doctors and an epilepsy nurse. Patients Education and Counseling 1999; 37: 43–47. 16. Zigmond, A. S. and Snaith, R. P. The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica 1983; 67: 361–370. 17. Ridsdale, L., Robins, D., Fitzgerald, A., Jeffery, S., McGee, L. and the Epilepsy Care Evaluation Group., Epilepsy in general practice: patients’ psychological symptoms, and their perception of stigma. British Journal of General Practice 1996; 46: 365–366. 18. Jacoby, A., Baker, G. A., Steen, N., Potts, P. and Chadwick, D. W. The clinical course of epilepsy and its psychosocial correlates: findings from a UK community study. Epilepsia 1996; 37: 148–161. 19. Mills, N., Bachman, M., Harvey, I., McGowan, M. and Hine, I. Patients’ experience of epilepsy and health care. Family Practice 1997; 14: 117–123. 20. Goldberg, D. and Huxley, P. Common Mental Disorders: A Biosocial Approach. London, Routledge, 1992. 21. Rogers, D. and Taylor, M. Don’t Fit in Front of Your Workmates: Living With Epilepsy in Doncaster. Doncaster Medical Audit Advisory Group, 1996. 22. Ridsdale, L., Kwan, I. and Cryer, C. The effect of a special epilepsy nurse on patients’ knowledge of epilepsy and their emotional state. British Journal of General Practice 1999; 49: 285–288. 23. Goldstein, L. H. Effectiveness of psychological interventions for people with poorly controlled epilepsy. Journal of Neurology, Neurosurgery and Psychiatry 1997; 63: 137–142.
doi: 10.1053/seiz.1999.0366, available online at http://www.idealibrary.com on
The effect of specially trained epilepsy nurses in primary care: a review LEONE RIDSDALE∗ Reader in General Practice & Consultant Neurologist, Department of Clinical Neurosciences, Guy’s, King’s and St Thomas’s School of Medicine, De Crespigny Park, Denmark Hill, London SE5 8AF, UK The paper describes the evidence on potential effects of specially trained nurses working in primary care for patients with epilepsy. The method used was a search and review of evidence published from 1992 to 1999. It was found that where nurses have been trained in epilepsy care, there is good evidence that it is feasible for them to set up and run clinics in family practice. Where this has been undertaken, there is level I evidence that this is acceptable and satisfactory to patients. Where clinics have been set up in primary care, there is level I evidence that there has been an increase in the information and advice recorded as being provided to patients. Structured checklists may additionally prompt service providers to increase the level of information provided to patients, and this hypothesis is being tested currently. In conclusion, epilepsy nurses can set up clinics for patients in primary care which are well attended, satisfy patients, and which are associated with better recording of advice given. There is little published evidence on outcome as opposed to process measures. Trials with adequate sample size and long-term followup are necessary to identify whether nurse monitoring with advice and counselling can benefit patients in terms of epilepsy self-management in the long run. c 2000 BEA Trading Ltd
Key words: epilepsy; nurse specialist; primary health care; health education; psychology.
INTRODUCTION
them to set up and operate call and recall systems for monitoring patients;
Social scientists1 and self-help groups2 have found that people with epilepsy report that they have been provided with too little information and support for them to manage their condition as well as they would wish. Initial and continuing care for most people with epilepsy in the UK is provided by their family doctor, and this is the source of care they generally prefer3 . Many family doctors report that they lack the time, and sometimes the expertise to manage patients with epilepsy4 . Specialists in the UK see and evaluate patients with new epilepsy who are referred by their family doctor, and they continue to manage about one in four patients who have frequent attacks of epilepsy. In the context of people with epilepsy getting too little information and advice, it has been proposed that some tasks might potentially be undertaken by specially trained nurses5, 6 . Before assessing evidence on the effect of this innovation, the potential tasks that can be performed by nurses need to be identified, and their relationship with family doctors and specialists. The potential tasks that nurses might undertake include: (1) advising on the creation of registers of patients with active epilepsy in primary care, and using ∗ E-mail: [email protected]
1059–1311/00/010043 + 04
$35.00/0
(2) providing advice about the medical and social aspects of epilepsy. The medical aspects of epilepsy, include information about the diagnosis, tests for epilepsy, its causes, prognosis, drug effects and side effects, contraception and pregnancy. The social aspects of lifestyle management include accident prevention, driving, employment, alcohol, social services and self-help groups could also be addressed; (3) counselling, for the life events and difficulties that are a consequence of the condition with the aim of the prevention and management of psychological illness; (4) liaison on behalf of patients with medical professionals and social agencies. In the UK the National Society for Epilepsy and other groups have trained nurses to a higher level so that they can work in association with a group of family practices and/or in conjunction with a specialist in epilepsy care. These nurses have gone on to offer day release courses to nurses in primary care, so that they can set up clinics in family practice just as they have c 2000 BEA Trading Ltd
44
L. Ridsdale
already done for other chronic conditions like asthma and hypertension. A schematic representation of the tasks and roles is provided in Fig. 1. We have investigated and evaluated the potential role of nurses in epilepsy care, and want to place this work in the context of the literature. The aim of this paper is to review the evidence for the effects of epilepsy trained nurses in primary care.
MATERIALS AND METHODS Literature search strategy As the idea of nurses with special epilepsy training is a new one, we made a search of literature published from 1992 to 1999. The strategy was to include all papers which used ‘nurses’ and ‘epilepsy’ in the title or as textwords. The addition of a reference to effectiveness was not required, as it was unlikely that evidence would be found using the combined terms. There is evidence on the effectiveness of special nurses in other conditions which could have been used to make analogies with epilepsy, but they were excluded. Where investigators were known to have undertaken recent work, they were asked for information about unpublished findings and papers which were in press. The databases used were MEDLINE, Psychinfo, EMBASE, the Science Citation Index, the Cochrane database, and CINAHL. Medical Subject Headings (MeSH) were used on MEDLINE, EMBASE and CINAHL. They included ‘nurse practitioners’, ‘nurse clinicians’, ‘hospital nursing staff’, ‘primary nursing care’, and ‘patient care team’. Similar keywords were used on non-MESH databases. The term ‘epilepsy’ was exploded, so that all types of epilepsy would be included. Sackett et al.7 and Griffiths and Feder8 have described criteria and a process for weighing up the value of evidence for clinical practice. The categories are studies: I. based on well-designed, randomized controlled trials, meta-analyses, or systematic reviews, II. based on well-designed cohort or case control studies, III. based on uncontrolled studies or consensus. These criteria were used in evaluating the literature.
RESULTS The literature provided useful information on the role of nurses in epilepsy in four main areas.
1. Advising on the creation of registers of patients with epilepsy with monitoring in primary care In the context of an audit, Taylor and others9 have shown that primary care teams can create registers of their patients with epilepsy and monitor them. In a randomized controlled trial Ridsdale et al.10 have shown that it was feasible for a nurse, with special training and administrative support, to set up a register in six general practices. Of 127 patients offered appointments to see the nurse for advice and counselling about their epilepsy, 106 (83%) attended. Mills et al.11 offered nurse appointments to 283 patients in seven family practices as part of a quasi-experimental trial. One hundred and forty eight (52%) of the patients attended a nurse-run clinic. Thapar12 proposed that a structured approach to care may itself improve the quantity (and quality) of services provided for people with epilepsy. He and his colleagues are testing the effect of a structured checklist in a randomized trial (Thapar personal communication).
2. Advice In the USA Diloro et al.13 surveyed doctors’ and nurses’ perceptions of patients’ need for learning on specific epilepsy-related topics. Nurses rated the importance of patients’ learning needs more highly than doctors on all topics. The authors inferred that nurses may receive greater emphasis in their training on their role as teachers in preparing patients for selfmanagement. Scambler et al.14 found that a group of patients in the UK, who had not seen a nurse for epilepsy, had high expectations of nurses when they compared them with GPs and specialists. Patients who had actually seen a nurse had high satisfaction levels across all domains when compared with GPs and specialists. The evidence supports the hypothesis that when nurses have provided advice, and perhaps more importantly, time, patients have been satisfied with this new role11, 15 . Mills et al.11 found that patients randomized to the nurse intervention were more likely than controls to report never missing taking their anti-epileptic drugs after the intervention. In our trial10 , there was a significant increase in the advice given and recorded on driving, drug compliance, adverse drug effects, alcohol, and self-help groups for patients in the intervention group compared with those in the control group. When patients were interviewed, they particularly appreciated advice given on ‘social’ topics like driving, free prescription availability, safe use of alcohol, and employment services for people with disabilities15 .
Effect of specially trained epilepsy nurses
45
SPECIALIST DOCTOR Diagnosis, intractable seizures and drug withdrawal
AMILY PRACTITIONER resentation, problem differentiation, eferral, management, monitoring nd re-referral
PATIENT
RIMARY CARE NURSE onitoring patients, advice on rug self-management, driving, elf-help groups, alcohol, periodic eview dependent on patient
SPECIALIST NURSE New patient explanation, intractable seizures, teaching practice nurses, liaison
Fig. 1: The team and its potential roles.
3. Counselling Instruments such as the Hospital Anxiety and Depression Rating Scale16 (HAD), have been used in trials of psychological interventions for other disorders. We17 found that patients who reported an attack of epilepsy in the prior 6 months were three times more likely to have depression symptom scores of 8 or more on the HAD scale, than those who reported no recent epileptic attack. This suggests that patients with active epilepsy are at greater risk of depression or borderline depression. A temporal relationship between recent epilepsy attacks and patients’ quality of life, depressive symptoms and felt stigma has been confirmed in other studies18, 19 . Without support, physical and psychological problems may become compounded, with decreasing ability to cope20 . Where nurses with special training are available to a group of family practices in one locality, it is likely that doctors will refer patients who have more difficulty in controlling their epilepsy to the nurses. These people are likely to suffer more emotional symptoms in consequence of their poorly controlled epilepsy. This hypothetical association is supported by descriptive evidence from the North of England. Rogers and Taylor21 reported that since 1988, 122 of 444 (27%) of patients had been referred to nurse specialists from a group of family practices in Doncaster. Amongst patients who had used the nurse liaison service 41 of 111 (37%) had depression scores over 8, while 76 of 296 (26%) of those who had never used the service had high scores (χ 2 = 4.46, P = 0.03). This represents level III evidence that patients referred to nurse specialists are likely not only to have more difficulty controlling their epilepsy, but also to be more severely
affected in terms of their emotional well-being. In a trial we22 found that patients who were randomized to see a nurse had significantly lower depression scores after the intervention. The group that seemed to benefit more were those people who had not had an epilepsy attack recently. This quantitative evidence may be understood better by examining qualitative evidence from a subgroup of patients who were interviewed. They commented on the nurses ability to reduce their fears and anxieties15 . A review by Goldstein23 of the evidence on the effectiveness of psychological interventions for people with poorly controlled epilepsy suggests that when there is a concurrent high level of psychological distress, the care package will need to be much more intensive to have a significant effect. 4. Liaison on behalf of patients with medical, professional and social agencies Rogers and Taylor21 and our own group15 found the nurses liaison role was valued both by patients and doctors. Beneficial roles identified included on the one hand reducing the need for follow-up visits with medical specialists, and on the other hand nurses acting as trouble-shooters providing rapid access to the specialist where it was necessary. So a better match was achieved between needs for different levels of care, and care provided. Where there is more than one specialist nurse working in a locality, as there was in Doncaster, nurses were additionally able to provide emergency advice. An increase in the level and availability of advice such as this might prevent inappropriate use of ambulance, emergency and inpatient services.
46
CONCLUSIONS Where nurses have been trained in epilepsy care, there is level I evidence that it is feasible for them to set up and run clinics in family practice. Where this has been undertaken, there is also level I evidence that this is acceptable and satisfactory to patients. Where clinics have been set up in primary care, there is level I evidence that there has been an increase in the information and advice recorded as being provided to patients. Structured checklists may additionally prompt service providers to increase the level of information provided to patients and this hypothesis is being tested currently. There is level II evidence that patients with poorly controlled epilepsy are at greater risk of a lower quality of life, more symptoms of depression and feelings of stigma. This needs to be acknowledged and planned for if appropriate psychological as well as medical support is to be provided. There is evidence that nurserun clinics may improve the emotional well-being of some patients. These findings need to be tested in other studies. There is level III evidence that nurses with sufficient training and time should monitor all patients with epilepsy annually. Those with poorly controlled epilepsy require more frequent appointments5 . Understanding the needs of people with epilepsy in primary care and testing the effect of new interventions designed to help them is an important and relatively new area of investigation. The evidence reviewed here is tentative. Theories and methods of measuring outcome require further development. Many questions remain unanswered requiring more exploratory and hypothesis testing research.
ACKNOWLEDGEMENTS This review was initially undertaken at the request of Professor S. Shorvon, and formed secondary evidence for a Royal College of Physicians review with guidelines for poorly controlled epilepsy. The author acknowledges this stimulus, and Professor Roger Jones who provided feedback on an earlier draft.
REFERENCES 1. Scambler, G. Epilepsy. London, Routledge, 1989. 2. British Epilepsy Association, Towards a New Understanding. Leeds, British Epilepsy Association, 1990. 3. Ridsdale, L., Robins, D., Fitzgerald, A., Jeffery, S., McGee, L. and the Epilepsy Care Evaluation Group, Epilepsy monitoring and advice: general practitioners’ views, current practice and patients’ preferences. British Journal of General Practice 1996; 46: 11–14. 4. Thapar, A. J., Stott, N., Richens, A. and Kew, M. Attitudes of general practitioners to the care of people with epilepsy. Fam-
L. Ridsdale ily Practice 1998; 15: 437–442. 5. Royal College of Physicians, Institute of Neurology, and the National Society for Epilepsy. Adults with Poorly Controlled Epilepsy. Part 1. Clinical Guidelines for Treatment. Part 2. Practical Tools for Epilepsy Management. London, Royal College of Physicians, 1997. 6. Jain, P., Patterson, V. and Morrow, J. What people with epilepsy want from a hospital clinic. Seizure 1993; 2: 75–78. 7. Sackett, D. L., Richardson, W. S., Rosenberg, W. and Haynes, R. B. Evidence-based Medicine: How to Practice and Teach EBM. Edinburgh, Churchill Livingstone, 1997. 8. Griffiths, C. and Feder, G. An approach to using clinical guidelines. In: Evidence-based Practice in Primary Care (Ed. L. Ridsdale). Edinburgh, Churchill Livingstone, 1998. 9. Taylor, M. P., Readman, S., Hague, B., Boulter, V., Hughes, L. and Howell, S. A district epilepsy service with community based specialist liaison nurses and guidelines for shared care. Seizure 1994; 3: 121–127. 10. Ridsdale, L., Robins, D., Cryer, C., Williams, H. and the Epilepsy Care Evaluation Group, Feasibility and effects of nurse run clinics for patients with epilepsy in general practice: randomized controlled trial. British Medical Journal 1997; 314: 120–122. 11. Mills, N., Bachman, M., Harvey, I., Hine, I. and McGowan, M. The effect of a primary care based epilepsy specialist nurse service on quality of care from the patients’ perspective: quasiexperimental evaluation. Seizure 1998; 6: 1–8. 12. Thapar, A. J. Care of patients with epilepsy in the community: will new initiatives address old problems? British Journal of General Practice 1996; 46: 37–42. 13. Dilorio, C., Manteuffel, B. and Manteuffel, B. Learning needs of persons with epilepsy: a comparison of perceptions of persons with epilepsy, nurses and physicians. Journal of Neuroscience Nursing 1993; 25: 22–29. 14. Scambler, A., Scambler, G., Ridsdale, L. and Robins, D. Towards an evaluation of an epilepsy nurse specialist in primary care. Seizure 1996; 5: 225–258. 15. Ridsdale, L., Morgan, M. and O’Connor, C. Promoting selfcare in epilepsy: the views of patients on the advice they had received from specialists, family doctors and an epilepsy nurse. Patients Education and Counseling 1999; 37: 43–47. 16. Zigmond, A. S. and Snaith, R. P. The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica 1983; 67: 361–370. 17. Ridsdale, L., Robins, D., Fitzgerald, A., Jeffery, S., McGee, L. and the Epilepsy Care Evaluation Group., Epilepsy in general practice: patients’ psychological symptoms, and their perception of stigma. British Journal of General Practice 1996; 46: 365–366. 18. Jacoby, A., Baker, G. A., Steen, N., Potts, P. and Chadwick, D. W. The clinical course of epilepsy and its psychosocial correlates: findings from a UK community study. Epilepsia 1996; 37: 148–161. 19. Mills, N., Bachman, M., Harvey, I., McGowan, M. and Hine, I. Patients’ experience of epilepsy and health care. Family Practice 1997; 14: 117–123. 20. Goldberg, D. and Huxley, P. Common Mental Disorders: A Biosocial Approach. London, Routledge, 1992. 21. Rogers, D. and Taylor, M. Don’t Fit in Front of Your Workmates: Living With Epilepsy in Doncaster. Doncaster Medical Audit Advisory Group, 1996. 22. Ridsdale, L., Kwan, I. and Cryer, C. The effect of a special epilepsy nurse on patients’ knowledge of epilepsy and their emotional state. British Journal of General Practice 1999; 49: 285–288. 23. Goldstein, L. H. Effectiveness of psychological interventions for people with poorly controlled epilepsy. Journal of Neurology, Neurosurgery and Psychiatry 1997; 63: 137–142.