Shedding light on blepharospasm: A patient-researcher partnership approach to assessment of photophobia and impact on activities of daily living

Neuro-Ophthalmology

Volumn 31, Issue 3, 2007, Pages 49-54

  Judd, Rebecca A ^a,d   Digre, Kathleen B ^a,b   Warner, Judith E A ^a,b   Schulman, Susan F ^c   Katz, Bradley J ^a,b  

^a UNIVERSITY OF UTAH SCHOOL OF MEDICINE   (United States)

^b UNIVERSITY OF UTAH HEALTH SCIENCES CENTER   (United States)

^c Links to Clinical Research

^d Northridge Hospital Medical Center   (United States)

Author keywords

Activities of daily living; BEB; Blepharospasm; Dystonia; Movement disorder; Photophobia; Quality of life

Indexed keywords

ADULT; ARTICLE; BLEPHAROSPASM; CONTROLLED STUDY; DAILY LIFE ACTIVITY; DISEASE EXACERBATION; FEMALE; HUMAN; MAJOR CLINICAL STUDY; MALE; PHOTOPHOBIA; PHOTOSENSITIVITY; QUALITY OF LIFE; QUESTIONNAIRE;

EID: 34447132245     PISSN: 01658107     EISSN: 1744506X     Source Type: Journal    
DOI: 10.1080/01658100701247646     Document Type: Article

References (42)

1. Faucett D. Essential blepharospasm. In: Yanoff M, Duker JS, eds. Ophthalmology. Philadelphia: Mosby; 2004: 695-697.
2. Elston JS, Marsden CD, Grandas F, Quinn NP. The significance of ophthalmological symptoms in idiopathic blepharospasm. Eye. 1988;2:435-439.
3. Kraft SP, Lang AE. Cranial dystonia, blepharospasm and hemifacial spasm: clinical features and treatment, including the use of botulinum toxin. CMAJ. 1988;139:837-844.
4. Defazio G, Livrea P. Epidemiology of primary blepharospasm. Mov Disord. 2002;17:7-12.
5. Defazio G, Livrea P, De Salvia R, et al. Prevalence of primary blepharospasm in a community of Puglia region, Southern Italy. Neurology. 2001;56:1579-1581.
6. Duffey PO, Butler AG, Hawthorne MR, Barnes MP. The epidemiology of the primary dystonias in the north of England In: Fahn S, Marsden CD, DeLong MR, eds. Advances in Neurology, 3: Dystonia. Philadelphia: Lippincott-Raven; 1998:121-126.
7. Nakashima K, Kusumi M, Inoue Y, Takahashi K. Prevalence of focal dystonias in the western area of Tottori Prefecture in Japan. Mov Disord. 1995;10:440-443.
8. Nutt JG, Muenter MD, Aronson A, Kurland LT, Melton LJ 3rd. Epidemiology of focal and generalized dystonia in Rochester, Minnesota. Mov Disord. 1988;3:188-194.
9. Epidemiological Study of Dystonia in Europe (ESDE) Collaborative Group. A prevalence study of primary dystonia in eight European countries. J Neurol. 2000;247:787-792.
10. Aramideh M, Eekhof JL, Bour LJ, et al. Electromyography and recovery of the blink reflex in involuntary eyelid closure: a comparative study. J Neurol Neurosurg Psychiatry. 1995;58:692-698.
11. Berardelli A, Rothwell JC, Day BL, Marsden CD. Pathophysiology of blepharospasm and oromandibular dystonia. Brain. 1985;108(Pt 3):593-608.
12. Creel DJ, Holds JB, Anderson RL. Auditory brain-stem responses in blepharospasm. Electroencephalogr Clin Neurophysiol. 1993;86:138-140.
13. Pauletti G, Berardelli A, Cruccu G, Agostino R, Manfredi M. Blink reflex and the masseter inhibitory reflex in patients with dystonia. Mov Disord. 1993;8:495-500.
14. Tolosa E, Montserrat L, Bayes A. Blink reflex studies in focal dystonias: enhanced excitability of brainstem interneurons in cranial dystonia and spasmodic torticollis. Mov Disord. 1988;3:61-69.
15. Fine PG, Digre KB. A controlled trial of regional sympatholysis in the treatment of photo-oculodynia syndrome. J Neuroophthalmol. 1995;15:90-94.
16. McCann JD, Gauthier M, Morschbacher R, et al. A novel mechanism for benign essential blepharospasm. Ophthal Plast Reconstr Surg. 1999;15:384-389.
17. Adams WH, Digre KB, Patel BCK, Anderson RL, Warner JEA, Katz BJ. The evaluation of light sensitivity in benign essential blepharospasm. Am J Ophthalmol. 2006;142:82-87.
18. Anderson RL, Patel BC, Holds JB, Jordan DR. Blepharospasm: past, present, and future. Ophthal Plast Reconstr Surg. 1998;14:305-317.
19. Hallett M. Blepharospasm: recent advances. Neurology. 2002;59:1306-1312.
20. Jankovic J, Orman J. Blepharospasm: demographic and clinical survey of 250 patients. Ann Ophthalmol. 1984;16:371-376.
21. Müller J, Wissel J, Kemmler G, et al. Craniocervical dystonia questionnaire (CDQ-24): development and validation of a disease-specific quality of life instrument. J Neurol Neurosurg Psychiatry. 2004;75:749-753.
22. Grandas F, Elston J, Quinn N, Marsden CD. Blepharospasm: a review of 264 patients. J Neurol Neurosurg Psychiatry. 1988;51:767-772.
23. Reimer J, Gilg K, Karow A, Esser J, Franke GH. Health-related quality of life in blepharospasm or hemifacial spasm. Acta Neurol Scand. 2005;111:64-70.
24. Hall TA, McGwin G, Jr., Searcey K, et al. Health-related quality of life and psychosocial characteristics of patients with benign essential blepharospasm. Arch Ophthalmol. 2006;124:116-119.
25. Lindeboom R, De Haan R, Aramideh M, Speelman JD. The blepharospasm disability scale: an instrument for the assessment of functional health in blepharospasm. Mov Disord. 1995;10:444-449.
26. Grivet D, Robert PY, Thuret G, et al. Assessment of blepharospasm surgery using an improved disability scale: study of 138 patients. Ophthal Plast Reconstr Surg. 2005;21:230-234.
27. Tucha O, Naumann M, Berg D, Alders GL, Lange KW. Quality of life in patients with blepharospasm. Acta Neurol Scand. 2001;103:49-52.
28. Muller J, Kemmler G, Wissel J, et al. The impact of blepharospasm and cervical dystonia on health-related quality of life and depression. J Neurol. 2002;249:842-846.
29. Fahn S. Assessment of the primary dystonias. In: Munsat TL, ed. Quantification of Neurologic Deficit. Stoneham, MA: Butterworth; 1989: 241-270.
30. Chapman KL, Bartley GB, Waller RR, Hodge DO. Follow-up of patients with essential blepharospasm who underwent eyelid protractor myectomy at the Mayo Clinic from 1980 through 1995. Ophthal Plast Reconstr Surg. 1999;15:106-110.
31. Vanagaite J, Pareja JA, Storen O, White LR, Sand T, Stovner LJ. Light-induced discomfort and pain in migraine. Cephalalgia. 1997;17:733-741.
32. Stewart WF, Lipton RB, Celentano DD, Reed ML. Prevalence of migraine headache in the United States: relation to age, income, race, and other sociodemographic factors. JAMA. 1992;267:64-69.
33. Hilker R, Schischniaschvili M, Ghaemi M, Jacobs A, Rudolf J. Health related quality of life is improved by botulinum neurotoxin type A in long term treated patients with focal dystonia. J Neurol Neurosurg Psychiatry. 2001;71:193-199.
34. Schoeters L, Schelfhout P, Roets G, et al. Partnership working between university researchers and self-advocacy organizations: 'A way forward for inclusion?' in England and 'Fine feathers make a fine bird' in Flanders. J Intellect Disabil. 2005;9:345-357.
35. Macaulay AC, Commanda LE, Freeman WL, et al. Participatory research maximises community and lay involvement. North American Primary Care Research Group. BMJ. 1999;319:774-778.
36. CDC/ATSDR Committee on Community Engagement. Principles of Community Engagement. Part 3: Applying Principles to the Community Engagement Process. 1997; www.cdc.gov/phppo/pce/index.htm.
37. Baty BJ, Kinney AY, Ellis SM. Developing culturally sensitive cancer genetics communication aids for African Americans. Am J Med Genet A. 2003;118:146-155.
38. Bradley EA, Bradley D, Bartley GB. Evaluating health-related quality of life in ophthalmic disease: practical considerations. Arch Ophthalmol. 2006;124:121-122.
39. Tu JV, Willison DJ, Silver FL, et al. Impracticability of informed consent in the Registry of the Canadian Stroke Network. N Engl J Med. 2004;350:1414-1421.
40. Armstrong D, Kline-Rogers E, Jani SM, et al. Potential impact of the HIPAA privacy rule on data collection in a registry of patients with acute coronary syndrome. Arch Intern Med. 2005;165:1125-1129.
41. van Wersch A, Eccles M. Involvement of consumers in the development of evidence based clinical guidelines: practical experiences from the North of England evidence based guideline development programme. Qual Health Care. 2001;10:10-16.
42. McIver S. Preparation and training: the key to better patient involvement. Qual Health Care. 2001;10:3.