Hostname: page-component-848d4c4894-nmvwc Total loading time: 0 Render date: 2024-06-30T20:43:30.690Z Has data issue: false hasContentIssue false
  • English
  • Français

Barriers to the Management of Patients with Surgically Remediable Intractable Epilepsy

Published online by Cambridge University Press:  07 November 2014

Kari Swarztrauber
Get access Rights & Permissions [Opens in a new window]

Abstract

It is estimated that only a small proportion of patients with surgically remediable intractable epilepsy receive surgical treatment. There are multiple reasons why this is the case. Patients with intractable epilepsy are sometimes severely disabled and disability can create barriers to getting recommended care. Patients with epilepsy are not well informed about their condition and the available treatments. The incidence of epilepsy is similar in minority populations, and surgically remediable epilepsy frequently presents in adolescence. Nevertheless, these vulnerable populations have specific barriers to receiving epilepsy care, which are often not addressed. In addition, despite scientific evidence for the benefits of the surgical treatment of epilepsy, many healthcare providers do not recommend or adequately discuss surgery with patients. Solutions to these barriers will require interventions that result in informed and capable patients who actively participate in their care and healthcare providers who practice culturally sensitive, recommended care.

Type
Review Article
Information
CNS Spectrums , Volume 9 , Issue 2 , February 2004 , pp. 146 - 152
Copyright
Copyright © Cambridge University Press 2004

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

1.Hauser, WA, Hesdorffer, DC. Epilepsy: Frequency, Causes and Consequences. New York, NY: Demos Press; 1990.Google Scholar
2.Engel, J JrShewmon, DA. Overview: who should be considered a surgical candidate? In: Engel, J Jr ed. Surgical Treatment of the Epilepsies. 2nd ed. New York, Raven Press; 1993:23–34.Google ScholarPubMed
3.Swarztrauber, K, Dewar, S, Engel, J Jr.Patient attitudes about treatments for intractable epilepsy. Epilepsy Behav. 2003;4:19–25.CrossRefGoogle ScholarPubMed
4.Wall, M, Buchanan, N, Baird-Lambert, JA. The management of epilepsy: patients' perceptions and expectations. Med J Aust. 1987;146:473–476.CrossRefGoogle ScholarPubMed
5.Begley, CE, Annegers, JF, Lairson, DR, Reynolds, TF, Hauser, WA. Cost of epilepsy in the United States: a model based on incidence and prognosis. Epilepsia. 1994;35:1230–1243.CrossRefGoogle Scholar
6.Fisher, RS, Vickrey, BG, Gibson, P, et, al. The impact of epilepsy from the patient's perspective I. Descriptions and subjective perceptions. Epilepsy Research. 2000;41:39–51.CrossRefGoogle ScholarPubMed
7.Ryan, R, Kempner, K, Emlen, AC. The stigma of epilepsy as a self-concept. Epilepsia. 1980;21:433–444.CrossRefGoogle ScholarPubMed
8.Mills, N, Bachmann, M, Harvey, I, McGowan, M, Hine, I. Patients' experience of epilepsy and health care. Fam Pract. 1997;14:117–123.CrossRefGoogle ScholarPubMed
9.Harshorn, JC, Byers, VL. Importance of health and family variables related to quality of life in individuals with uncontrolled seizures. J Neurosci Nurs. 1994;26:288–297.CrossRefGoogle Scholar
10.Dawkins, JL, Crawford, PM, Stammers, TG. Epilepsy: a general practice study of knowledge and attitudes among sufferers and non-sufferers. Br J Gen Pract. 1993;43:453–457.Google ScholarPubMed
11.Long, L, Reeves, AL, Moore, JL, Roach, J, Pickering, CT. An assessment of epilepsy patients' knowledge of their disorder. Epilepsia. 2000;41:727–731.CrossRefGoogle ScholarPubMed
12.Berg, AT. Understanding the delay before epilepsy surgery: who develops intractable focal epilepsy and when? CNS Spectr. 2004;2136–2144.Google Scholar
13.Bleyer, AW, Tejeda, H, Murphy, SB, et, al. National cancer clinical trials: children have equal access; adolescents do not. J Adolesc Health. 1997;21:366–373.CrossRefGoogle ScholarPubMed
14.Fisher, RS, Vickrey, BG, Gibson, P, et, al. The impact of epilepsy from the patient's perspective I. Descriptions and subjective persceptions. Epilepsy Res. 2000;41:39–51.CrossRefGoogle Scholar
15.Leikin, SL. An ethical issue in biomedical research: the involvement of minors in informed and third party consent. Clin Res. 1983;31:34–40.Google ScholarPubMed
16.Melton, GB. Toward “personhood” for adolescents. Autonomy and privacy as values in public policy. Am Psychol. 1983;38:99–103.CrossRefGoogle ScholarPubMed
17.Hoare, P, Mann, H. Self-esteem and behavioral adjustment in children with epilepsy and children with diabetes. J Psychosom Res. 1994;38:859–869.CrossRefGoogle ScholarPubMed
18.Galletti, F, Rinna, A, Acquafondata, C. An insight into children's and adolescents' experience of seizures and epilepsy. Seizure. 1998;7:309–316.CrossRefGoogle ScholarPubMed
19.Saetermoe, CL, Farruggia, SP, Lopez, C. Differential parental communication with adolescents who are disabled and their healthy siblings. J Adolesc Health. 1999;24:427–432.CrossRefGoogle ScholarPubMed
20.Kapphahn, CJ, Wilson, KM, Klein, JD. Adolescent girls' and boys' preferences for provider gender and confidentiality in their health care. J Adolesc Health. 1999;25:131–142.CrossRefGoogle ScholarPubMed
21.Newacheck, PW, Brindis, CD, Cart, CU, Marchi, K, Irwin, CE. Adolescent health insurance coverage: recent changes and access to care. Pediatrics. 1999;104(2 pt 1):195–202.CrossRefGoogle ScholarPubMed
22.Engel, J Jr.Update on surgical treatment of the epilepsies. Summary of the Second International Palm Desert Conference on the Surgical Treatment of the Epilepsies (1992). Neurology. 1993;43:1612–1617.CrossRefGoogle ScholarPubMed
23.Grieco, EM, Cassidy, RC. Overview of Race and Hispanic Origins: Census 2000 Brief [online]. Available at: http://www.census.gov/prod/2001pubs/c2kbr01-1.pdf. Accessed January 10, 2004Google Scholar
24.Annegers, JF. Dubinsky, S. Coan, SP. Newmark, ME. Roht, L. The incidence of epilepsy and unprovoked seizures in multiethnic, urban health maintenance organizations. Epilepsia. 1999;40:502–506.CrossRefGoogle ScholarPubMed
25.Kiefe, CI, Williams, OD, Weissman, NW, Schreiner, PJ, Sidney, S, Wallace, DD. Changes in the US health care access in the 90s: race and income differences from the CARDIA Study. Coronary Artery Risk Development in Young Adults. Ethn Dis. 2000;10:418–431.Google ScholarPubMed
26.Zuvekas, SH, Weinick, RM. Changes in access to care, 1977-1996; the role of health insurance. Health Serv Res. 1999;34(1 pt2):271–279.Google ScholarPubMed
27.Thompson, EE, Neighbors, HW, Munday, C, Jackson, JS. Recruitment and retention of African American patients for clinical research: an exploration of response rates in an urban psychiatric hospital. J Consult Clin Psychol. 1996;64:861–867.CrossRefGoogle Scholar
28.Collins, TC, Clark, JA, Petersen, LA, Kressin, NR. Racial differences in how patients perceive physician communication regarding cardiac testing. Med Care. 2002;40(suppl 1):27–34.CrossRefGoogle ScholarPubMed
29.Wolinsky, H. Steps still being taken to undo damage of “America's Nuremberg.” Ann Intern Med. 1997;127:143–144.Google ScholarPubMed
30.Marin, G, Marin, B. Research with Hispanic Populations, vol. 23. Newbury Park, Calif: Sage; 1991.CrossRefGoogle Scholar
31.Grimshaw, JM, Eccles, MP, Walker, AE, Thomas, RE. Changing physicians' behavior: what works and thoughts on getting more things to work. Journal of Continuing Education in Health Professions. 2002;22:237–243.CrossRefGoogle ScholarPubMed
32.McGlynn, EA, Asch, SM, Adams, J, et, al. The quality of health care delivered to adults in the United States. New Engl J Med. 2003;348:2635–2645.CrossRefGoogle ScholarPubMed
33.Flocke, SA, Stange, KC, Fedirko, TL. Dissemination of information about the US Preventative Service Task Force guidelines. Arch Fam Med. 1994;3:1006–1008.CrossRefGoogle ScholarPubMed
34.Engel, J JrWiebe, S, French, MD, et, al. Practice parameter: temporal lobe and localized neocortical resections for epilepsy: report of the Quality Standards Subcommittee of the American Academy of Neurology, in Association with the American Epilepsy Society and the American Association of Neurological Surgeons. Neurology. 2003;60:538–547.CrossRefGoogle Scholar
35.Swarztrauber, K, Lawyer, BL. Neurologists 2000: AAN member demographic and practice characteristics. American Academy of Neurology Practice Characteristics Subcommittee Report. St. Paul, Minn: American Academy of Neurology; 2001.Google Scholar
36.Wennberg, JE, Barnes, BA, Zubkoff, M. Professional uncertainty and the problem of supplier-induced demand. Soc Sci Med. 1982;16:811–824.CrossRefGoogle ScholarPubMed
37.Kahan, JP, Park, RE, Leape, LL, et, al. Variations by specialty in physician ratings of the appropriateness and necessity of indications for procedures. Med Care. 1996;34:512–523.CrossRefGoogle ScholarPubMed
38.Chadwick, D, Why are so few patients with epilepsy treated surgically? A United Kingdom perspective. Acta Neurochir Suppl 1990;S50:117–118.Google Scholar
39.Dilorio, C, Hennessy, M, Manteuffel, B. Epilepsy self-management: a test of a theoretical model. Nurs Res. 1996;45:211–217.CrossRefGoogle Scholar
40. Improving Chronic Illness Care Web site. Available at: www.improvingchroniccare.org/change/model/components.html. Accessed on July 18, 2003.Google Scholar
41. Making the Connections: final report on transport and social exclusion, report by the social exclusion unit. www.socialexclusionunit.gov.uk/publications/reports/html/transportfinal/chapter11htm. Accessed on July, 20 2003.Google Scholar
42.Salinsky, MC. Wegener, K. Sinnema, F. Epilepsy, driving laws, and patient disclosure to physicians. Epilepsia. 1999;33:469–472.CrossRefGoogle Scholar
43.Huang, MC, Liu, CC, Huang, CC. Effects of an educational program on parents with febrile convulsive children. Pediatr Neurol. 1998;18:150–155.CrossRefGoogle ScholarPubMed
44.Edwards, MH. Satisfying patient needs for surgical information. Br J Surg. 1990;77:463–465.CrossRefGoogle ScholarPubMed
45.Dilorio, C, Manteuffel, B. Preferences concerning epilepsy education: opinions of nurses, physicians, and persons with epilepsy. J Neurosci Nurs. 1995;27:29–34.CrossRefGoogle Scholar
46.Miranda, J, Azocar, F, Organista, KC, Muñoz, RF, Lieberman, A. Recruiting and retaining low-income Latinos in psychotherapy research. J Consult Clin Psychol. 1996;64:868–874.CrossRefGoogle ScholarPubMed
47.Wiebe, S, Blume, WT, Girvin, JP, Eliasziw, M. A randomized, controlled trial of surgery for temporal-lobe epilepsy surgery. N Engl J Med. 2001;345:311–318.CrossRefGoogle Scholar
48.Engel, J JrEpilepsy surgery. Curr Opin Neurol. 1994;7:140–147.CrossRefGoogle ScholarPubMed
49.Wiebe, S. Effectiveness and safety of epilepsy surgery: what is the evidence? CNS Spectrum 2004;2:xx–xxGoogle Scholar
50.Grimshaw, JM, Shirran, L, Thomas, R, et al.Changing provider behavior: an overview of systematic reviews of interventions. Med Care. 2001;39(8suppl 2):112–1145.CrossRefGoogle ScholarPubMed
51.O'Brien, T, Freemantle, N, Oxman, AD, Wolf, F, Davis, DA, Herrin, J. Continuing education meetins and workshops: effects on professional practice and health-care outcomes. Cochrane Database Syst Rev. 2001;CD003030.Google Scholar
52.Kwan, P, Brodie, M. Early identification of refractory epilepsy. N Engl J Med. 2000;342:314–319.CrossRefGoogle ScholarPubMed
53.Engel, J Jr. PI. Early randomized surgical epilepsy trial (ERSET). May 2002 NINDS RO1NS42372.Google Scholar
54.Smith, MC, Buelow, JM. Epilepsy. Dis Mon. 1996;42:729–827.CrossRefGoogle ScholarPubMed
55.St Peter, RF, Reed, MC, Kemper, P, Blumenthal, D. Changes in the scope of care provided by primary care physicians. New Engl J Med. 1999;341:1980–1985.CrossRefGoogle ScholarPubMed
56.Swarztrauber, K, Mittman, BS, Vickrey, BG. Physicians' preferences for specialty involvement in the care of patients with neurological conditions. Med Care. 2002;40:1196–1209.CrossRefGoogle ScholarPubMed