Learning disability and epilepsy. 2, a review of available outcome measures and position statement on development priorities

Seizure

Volumn 6, Issue 5, 1997, Pages 337-350

  Espie, Colin A ^a   Kerr, Mike ^b   Paul, Audrey ^c   O'Brien, Greg ^d   Betts, Tim ^e   Clark, Julia ^f   Jacoby, Ann ^g   Baker, Gus ^h  

^a GARTNAVEL ROYAL HOSPITAL   (United Kingdom)

^b Welsh Ctr for Learning Disabilities   (United Kingdom)

^c WESTERN INFIRMARY   (United Kingdom)

^d Northgate Hospital   (United Kingdom)

^e QUEEN ELIZABETH PSYCHIATRIC HOSPITAL   (United Kingdom)

^f Quarriers Epilepsy Centre   (United Kingdom)

^g NEWCASTLE UNIVERSITY   (United Kingdom)

^h WALTON CENTRE FOR NEUROLOGY AND NEUROSURGERY   (United Kingdom)

Author keywords

Epilepsy; Learning disability; Outcome measurement

Indexed keywords

ANTICONVULSANT THERAPY; BEHAVIOR; CAREGIVER; COGNITION; EPILEPSY; HUMAN; LEARNING DISORDER; OUTCOMES RESEARCH; PATIENT ATTITUDE; PRIORITY JOURNAL; PSYCHOMETRY; QUALITY OF LIFE; RATING SCALE; REVIEW; SEIZURE; SOCIAL INTERACTION;

EID: 0030830250     PISSN: 10591311     EISSN: None     Source Type: Journal    
DOI: 10.1016/S1059-1311(97)80033-7     Document Type: Article

References (85)

1. Kerr, M. and Espie, C.A. Learning disability and epilepsy 1: towards common outcome measures. Seziure 1997.
2. Espie, C.A. and Paul, A. Epilepsy and Learning Disabilities. In: The Clinical Psychologist's Handbook of Epilepsy: Assessment and Management (Eds L.H. Goldstein and C. Cull). Routledge, 1997.
3. Deb, S. and Fraser, W. The use of psychotropic medication in people with learning disabilities: towards rational prescribing. Human Psychopharmacohgy 1994; 9: 259-272
4. Bennett, T.L. The Neuropsychology of Epilepsy. New York, Plenum Press, 1992.
5. Guess, D., Roberts, S., Siegel-Causey, E., Ault, M., Guy, B. and Thompson, B. Analysis of behavior state conditions and associated environmental variables among students with profound handicaps. American Journal on Mental Retardation 1993; 97: 634-653.
6. Hoare, P. The development of psychiatric disorder among school children with epilepsy. Developmental Medicine and Child Neurology 1984; 26: 3-13
7. Lund, J. Epilepsy and psychiatric disorder in the mentally retarded adult. Acta Psychiatrica Scandanavica 1985; 72: 557-562.
8. Gillies, J.B., Espie, C.A. and Montgomery, J.M. The social and behavioural functioning of people with mental handicaps attending Adult Training Centres: a comparison of those with and without epilepsy. Mental Handicap Research 1989; 2: 129-136
9. Deb, S. and Hunter, D. Psychopathology of people with mental handicap and epilepsy 1: Maladaptive Behaviour. British Journal of Psychiatry 1991; 159: 822-826.
10. Espie, C.A., Pashley, A.S., Bonham, K.G., Sourindhrin, I. and O'Donovan, M. The mentally handicapped person with epilepsy: a comparative study investigating psychosocial functioning. Journal of Mental Deficiency Research 1989; 33: 123-135
11. Espie, C.A., Gillies, J.B. and Montgomery, J.M. Antiepileptic polypharmacy, psychosocial behaviour and locus of control orientation among mentally handicapped adults living in the community. Journal of Mental Deficiency Research 1990; 34: 351-360.
12. Brown, S., Betts, T., Chadwick, D., Hall, B., Shorvon, S. and Wallace, S. An epilepsy needs document. Seizure 1993; 2: 91-103.
13. Thompson, P.J. and Oxley, J. Social difficulties and severe epilepsy: survey results and recommendations. In: Chronic Epilepsy: its Prognosis and Management (Ed. M.R. Trimble). Chichester, UK, John Wiley and Sons 1989; pp. 113-131
14. Hoare, P. Epilepsy and the family, a medical symposium on new approaches to family care. Proceedings of a symposium sponsored by Sanofi UK Limited, Manchester 1988.
15. Espie, C.A., Paul, A., Graham, M., Sterrick, J. and McGarvey, C. (1997) The Epilepsy Outcome Scale: the development of a measure for use with carers of people with epilepsy plus learning disabilities (in press).
16. Ryan, R., Kempner, K. and Emlen, A.C. The stigma of epilepsy as a self-concept. Epilepsia 1980; 21: 433-444.
17. Herman, B.P. The relevance of social factors to adjustment in epilepsy. In: Epilepsy and Behavior, Frontiers of Clinical Neuroscience (Eds O. Devinski and W.H. Theodore), New York, Wylie-Liss, 1991: Volume 12.
18. Rosenbaum, M. A and Palmon, N. Helplessness and resourcefulness in coping with epilepsy. Journal of Consulting and Clinical Psychology 1984; 52: 244-253.
19. Jarvie, S. Self-perception and psychosocial functioning in people with intractable epilepsy. Ph.D. thesis. University of Glasgow, Scotland, U.K.
20. Chesterman, P., Elwes, R.D.C. and Reynolds, E.H. Failure of monotherapy in newly diagnosed epilepsy. In: The XVIth Epilepsy International Symposium. Advances in Epileptology (Eds P. Wolf, M. Dam, D. Janz. and F.E. Dreyfuss). 1987; 16: 461-464.
21. Baker, G.A., Smith, D.F., Dewey, M., Morrow, J., Crawford, P.M. and Chadwick, D.W. The development of a seizure severity scale as an outcome measure in epilepsy. Epilepsy Research 1991; 8: 245-251.
22. Baker, G.A., Smith, D.F., Dewey, M., Jacoby, A. and Chadwick, D.W. The initial development of a health-related quality of life model as an outcome measure in epilepsy. Epilepsy Research 1993; 16: 65-81.
23. Smith, D., Chadwick, D., Baker, G., Davis, G. and Dewey, M. Seizure severity and the quality of life. Epilepsia 1993; 34 (Suppl. 5): s31-s35.
24. Commission on Classification and Terminology of the International League Against Epilepsy. Proposal for the revised classification of epilepsies and epileptic syndromes. Epilepsia 1989; 30: 389-398.
25. Betts, T. Epilepsy, Psychiatry and Learning Difficulty. London. Martin Dunitz 1997.
26. Paul, A. Epilepsy or stereotopy: diagnostic issues in learning disabilities. Seizure 1997; 6: 111-120.
27. Carpay, H.A., Arts, W.F.M., Vermeulen, J. et al. Patient completed scales for measuring seizure severity of side-effects of anti-epileptic drugs in childhood epilepsy: development and psychometric analysis. Epilepsy Research 1996; 24: 173-181.
28. Alvarez, N. Discontinuance of antiepileptic medications in patients with developmental disability and diagnosis of epilepsy. American Journal on Mental Retardation 1989; 93: 593-599.
29. Fischbacher, E. Effective reduction of anticonvulsants on wellbeing. British Medical Journal 1982; 285: 423-424.
30. Brown, S.W., McGowan, M.E.L. and Reynolds, E.H. The influence of seizure type and medication on psychiatric symptoms in epileptic patients. British Journal of Psychiatry 1986; 148: 300-304.
31. Baker, G.A., Jacoby, A., Francis, P. et al. Development of an adverse events profile for assessing the effects of antiepileptic drug treatment. Epilepsia 1995; 36 (Suppl. 6).
32. UK). London, Harcourt Brace and Company, The Psychological Corporation, 1986.
33. Wechsler, D. Wechsler Memory Scale-Revised UK Edition (WMS-R). London, Harcourt Brace and Company, The Psychological Corporation, 1987.
34. Wilson, B.A., Cockburn, J. and Baddeley, A. The Rivermead Behavioural Memory Test (RBMT) Bury St Edmunds, Suffolk, Thames Valley Test Company.
35. Elliott, C.D., Murray, D.J. and Pearson, L.S. The British Ability Scales. Windsor, Berkshire, UK, NFER-Nelson, 1983.
36. Milner, B. Interhemispheric differences in localisation of psychological processes in man. British Medical Bulletin 1971; 27, 272.
37. Binnie, C.D., Kasteleijn-Nolst-Trenite, D.G., Smit, A.M., and Wilkins, A.J. Interactions of epileptiform EEG discharges and cognition. Epilepsy Research 1987; 1, 239-245.
38. Alperts, W.C.J. and Aldenkamp, A.P. Computerised neuropsychological assessment of cognitive functioning in children with epilepsy. Epilepsia 1990; 31 (Suppl. 4) s35-s40.
39. Aldenkamp, A.P., Baker, G.A., Pieters, M.S.M. et al. A-B Neurotoxity scale: Validity of a patient-based scale assessing neurotoxity. Epilepsy Resarch 1995; 20: 229-239.
40. Aldenkamp, A.P. and Baker, G.A. The further validation of the A-B Neurotoxicity scale. Epilepsy Research (in press).
41. Guess, D., Mulligan-Ault, M., Roberts, S. et al. Implications of biobehavioral states for the education and treatment of students with the most profoundly handicapping conditions. Journal of the Association for Persons with Severe Handicaps 1988; 13: 163-174.
42. Guess, D., Siegel-Causey, E., Roberts, S., Rues, J., Thompson, B. and Siegel-Causey, D. Assessment and analysis of behavior state and related variables among students with profoundly handicapping conditions. Journal of the Association for Persons with Severe Handicaps 1990; 15: 211-230.
43. Mudford, O.C., Roberts, J. and Hogg, J. Behavior state in adults with profound and multiple disabilities I: inter-observer agreement and disagreement in continuous recording. American Journal on Mental Retardation (in press).
44. Senatore, 1995.
45. Aman, M.G., Singh, N.N., Stewart, A.W. and Field, C.J. The Aberrant Behavior Checklist: a behavior rating scale for the assessment of treatment effects. American Journal of Mental Deficiency 1985; 89: 485-491.
46. Espie, C.A., Montgomery, J.M. and Gillies, J.B. The development of a psychosocial behaviour scale for the assessment of mentally handicapped people. Journal of Mental Deficiency Research 1988; 32: 395-403.
47. Nihira, K., Leland, H. and Lambert, N. Adaptive Behavior Scales, Austin, Texas, American Association on Mental Retardation, 1993.
48. Boudreault, M., Thivierge, J., Côtér, R., Boutin, P., Julien, Y. and Bergeron, S. Cognitive development and reading achievement in pervasive-ADD, situational-ADD and control children. Journal of Child Psychology and Psychiatry 1988; 29: 611-619.
49. O'Brien, G. The developmental and behavioural consequences of corpus callosal agenesis and Aicardi syndrome. In: Callosal Agenesis - the Natural Split Brain. (Eds M. Lassond and M.A. Jeeves). New York, Plenum Press, 1994; pp. 235-246.
50. O'Brien, G. A comparative study of young children and adults with Fragile X Syndrome. Genetic Counselling 1996; 7, 167.
51. O'Brien, G. Behavioural phenotypy in developmental psychiatry. European Child Adolescent Psychiatry 1992; (Suppl. 1), 1-61.
52. O'Brien, G. Behavioural phenotypes and their measurement. Developement Medicine and Child Neurology 1992; 34, 365-367.
53. O'Brien, G. Measurement of behaviour. In: Behavioural Phenotypes (Eds G. O'Brien and W. Yule). Clinics in Developemental Medicine 1995; 131, 45-58. MacKeith Press, Cambridge, UK.
54. Jacoby, A. Felt versus enacted stigma: a concept revisited. Social Science and Medicine 1996; 38: 261-274.
55. Baker, G.A., Jacoby, A. and Douglas, C. Quality of life outcomes of Lamotrigine used in treatment of patients with severe epileptic syndromes. Epilepsia 1996; 37 (Suppl. 4).
56. Lindsay, W.R. and Michie, A.M. Adaptation of the Zung Self-Rating Anxiety Scale for people with a mental handicap. Journal of Mental Deficiency Research 1988; 32: 485-490.
57. Dodrill, C.B., Batzel, L.W., Queisser, H.R. and Temkin, N.R. An objective method for the assessment of psychological and social problems among epileptics. Epilepsia 1980; 21: 123-135.
58. Sparrow, S.A., Balla, D.A. and Cicchetti, D.V. Vineland Adaptive Behaviour Scale: Expanded Interview Edition. Circle Pines, Minnesota, American Guidance, 1984.
59. Tate, R., Lulham, J.M., Broe, G.A., Strettles, B. and Pfaff, A. Journal of Neurology, Neurosurgery and Psychiatry 1989; 52, 1128-1134.
60. Sansom, D., Krishnan, V.H.R., Corbett, J. and Kerr, A. Emotional and behavioural aspects of Rett Syndrome. Developmental Medicine and Child Neurology 1993; 35: 340-345.
61. Zigmond, A.S. and Snaith, R.P. The hospital anxiety and depression scale. Acta Psychiatrica Scandanavica 1983; 67: 361-370.
62. Beck, A.T. and Steer, R.A. The Beck Depression Inventory: Manual. San Antonio, Texas, The Psychological Corporation, 1997.
63. Goldberg, D. The General Health Questionnaire. Windsor, Berkshire, UK, NFER-Nelson, 1978.
64. Berkman, P.L. Measurement of mental health in a general population survey. American Journal of Epidemiology 1991; 91: 105-111.
65. Zarat, S.H., Reever, K.E. and Bach-Peterson, J. Relatives of the impaired elderly: correlates of feelings of burden. The Gerontologist 1980; 20: 649-655.
66. Platt, S. Measuring the burden of psychiatric illness on the family: an evaluation of some rating scales. Psychological Medicine 1985; 15: 383-393.
67. Robinson, B.C. Validation of a care giver strain index. Journal of Gerontology 1983; 38: 344-348.
68. Hoare, P. The quality of life of children with chronic epilepsy and their families. Seizure 1993; 2: 269-275.
69. Jarvie, S., Espie, C.A. and Brodie, M.J. The development of a questionnaire to assess knowledge of epilepsy 1-general knowledge of epilepsy. Seizure 1993; 2: 179-185.
70. Jarvie, S., Espie, C.A. and Paul, A. Patients' knowledge about epilepsy. Paper presented at the 22nd International Epilepsy Congress, Dublin, Ireland, June 1997.
71. Rosenbaum, M. A schedule for assessing self-control behaviours: preliminary findings. Behavior Therapy 1980; 11: 109-121.
72. Espie, C.A. and Clark, J. The measurement of 'resourcefulness' and the prediction of coping with epilepsy. The Psychologist 3, Proceedings of the British Psychological Society 68: 1990.
73. Frydenberg, E. and Lewis, R. The Adolescent Coping Scale. Melbourne, Australia, The Australian Council for Educational Research Limited, 1993.
74. Baker, G.A., Jacoby, A., Smith, D.F. et al. Development of a novel scale to assess quality of life as part of a further refinement of a QoL model for epilepsy. Epilepsia 1994; 35: 591-596.
75. Jacoby, A., Baker, G.A., Smith, D.F. et al. Measuring the impact of epilepsy: development of a novel scale. Epilepsy Research 1993; 16: 83-88.
76. Jacoby, A., Baker, G.A. and Dewey, N. Development of an instrument to assess quality of life in children with epilepsy and learning disability. Quality of Life Research 1995; 4: 442.
77. Baker, G.A., Jacoby, A., Smith, D.F., Dewey, M., Johnson, A. and Chadwick, D.W. Quality of life: The Liverpool initiative. In: Quality of Life in Epilepsy. (Eds E. Dodson and M.R. Trimble). London, Ravens Press, 1994.
78. Jacoby, A. Assessing quality of life of children with epilepsy. Quality of Life Research 1995; 4: 441.
79. Iwata, B.A., Vollmer, T.R. and Zarcone, J.R. The experimental (functional) analysis of behaviour disorders: methodology, applications and limitations. In: Perspectives on the Use of Nonaversive and Aversive interventions for Persons with Developmental Disabilities. (Eds A.C. Repp and N.N. Singh). Sycamore IL, Sycamore Publishing Company, 1990.
80. Linnaker, O. DSM-III diagnoses compared with factor structure of the Psychopathology Instrument for Mentally Retarded Adults (PIMRA) in an institutionalised, mostly severely retarded population. Research in Developmental Disabilities 1991; 12: 143-153.
81. Aman, M.G., Singh, N.N., Stewart, A.W. and Field, C.J. Psychometric characteristics of the Aberrant Behavior Checklist. American Journal of Mental Deficiency 1985; 89: 492-502.
82. Newton, J.T. and Sturmey, P. The Aberrant Behavior Checklist: a British replication and extension of its psychometric properties. Journal of Mental Deficiency Research 1988; 32: 87-92.
83. Spreat, S. The AAMD Adaptive Behavior Scale. Journal of School Psychology 1982; 20: 45-56.
84. Jarvie, S., Espie, C.A. and Brodie, M.J. The development of a questionnaire to assess knowledge of epilepsy 2-knowledge of own condition. Seizure 1993; 2: 187-193.
85. Senatore, V., Matson, J.L., and Kazdin, A.E. An inventory to assess psychopathology of mentally retarded adults. American Journal of Mental Deficiency 1985; 89: 459-466.