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Quality of life in patients with blepharospasm

Tucha O, Naumann M, Berg D, Alders GL, Lange KW. Quality of life inpatients with blepharospasm.Acta Neurol Scand 2001: 103: 49±52. # Munksgaard 2001.

Objectives ± Administration of botulinum neurotoxin A (BONT/A) is acommon and effective treatment of blepharospasm. There is, however,no information regarding the emotional and social well-being of patientswith blepharospasm and patient acceptance of BONT/A therapy. Thepurpose of this study was to investigate aspects of quality of life ofpatients with blepharospasm and level of patient satisfaction withtreatment. Material and methods ± Fifty-one patients with blepharo-spasm who had been treated with BONT/A for years completed aquestionnaire providing information about quality of life. Results ±Results revealed reductions in social and emotional well-being ofpatients but, nonetheless, good acceptance of BONT/A therapy. Thepositive effects of BONT/A therapy were, however, accompanied by fearof a decreasing effect of BONT/A injections. Conclusion ± Although theobjective ®ndings following BONT/A injections in the treatment ofblepharospasm are appreciated by the patients, their well-being isaffected by fears and depression.

O. Tucha1, M. Naumann2, D. Berg2,G. L. Alders1, K. W. Lange1

1Department of Neuropsychology, University of

Regensburg, Regensburg, Germany; 2Department of

Neurology, University of WuÈrzburg, WuÈrzburg,

Germany

Key words: blepharospasm; quality of life; social

well-being; emotional well-being; botulinum toxin

Professor K. W. Lange, Institute of Psychology,

University of Regensburg, 93040 Regensburg, Germany

Telefax:++ 49 941 943 4496

e-mail: klaus.lange@psychologie.uni-regensburg.de

Accepted for publication August 29, 2000

Aspects of quality of life have recently been takeninto account in the evaluation of the therapy ofchronic diseases (1±9). In particular, the question offunctional, social and emotional well-being hasbeen raised with regard to diseases for which dif-ferent treatment strategies are available (10±12).

Blepharospasm is characterized by involuntaryspasms of orbicularis oculi muscles resulting inclosure of the eyes. This disorder was the ®rst focaldystonia to be treated with botulinum neurotoxintype A (BONT/A (13)). Publications on BONT/Atreatment of blepharospasm, including two double-blind studies, have reported a success rate rangingfrom 69 to 100% (14±16).

Functional blindness, a main symptom ofblepharospasm, may lead to drastic reductions inthe private and professional functioning of thesepatients. BONT/A therapy may effect a functionalimprovement in patients but it does not represent acure. To what extent the quality of life of thesepatients is affected by blepharospasm has not yetbeen examined. The purpose of the present studywas to investigate the emotional and social well-

being of subjects with blepharospasm who had beentreated with BONT/A over an extended period oftime.

Subjects and methods

Fifty-one adult out-patients (32 female, 19 male,mean agetSEM: 64.9t1.9 years) with the diag-nosis of idiopathic blepharospasm (mean dura-tion of diseasetSEM: 96.3t9.8 months) whohad been treated with BONT/A for 1 to 7 years(meantSEM: 33.4t4.6 months) were asked abouttheir social and emotional well-being in a qualityof life questionnaire. In all patients blepharo-spasm affected both eyes. None of the patientshad a history of further neurological or psychia-tric disorders. Patients were treated with12±20 mu Botox1 (n=34) or 120 mu Dysport1

(n=17) per eye in 3±4 sites around each eye, witha concentration of 100 mu Botox1/2.5 ml NaClor 500 mu Dysport1/2.5 ml NaCl. Patientsreported bene®ts from BONT/A injections lasting

Acta Neurol Scand 2001: 103: 49±52Printed in UK. All rights reserved

Copyright # Munksgaard 2001

ACTA NEUROLOGICASCANDINAVICA

ISSN 0001-6314

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2.4t0.3 months. The only reason for failure toimprove was an insuf®cient dose of BONT/A.

The questionnaire consisted of 20 items provid-ing information about emotional and social well-being as well as satisfaction with the BONT/Atherapy. Each item could be agreed to or rejectedby the patients. Furthermore, the items could bespeci®ed by comments or by ratings on a 3-pointor 4-point rating scale.

Results

All subjects completed the questionnaire. All but 1patient reported bene®cial effects of BONT/Atreatment. Seven patients mentioned short-termside-effects of the injections such as facial crampsor paralysis, blurred vision, diplopia and nausea. Allpatients reported satisfaction with the effects of themedication, and more than half declared themselvesto be very satis®ed. Only 1 patient could imagine lifewithout BONT/A therapy. Four patients reportedanxiety concerning BONT/A treatment and 27expressed their fear of increasing doses. Twenty-®ve subjects had considerable fear of going blind.Many patients felt very depressed (n=29) andexperienced great fear (n=19) when the symptomsof blepharospasm recommenced following a BONT/A injection. Furthermore, 32 subjects felt depressedbecause of the illness itself. Many patients (n=36)complained of considerable restrictions in theireveryday life while working in the house andgarden, driving, reading and watching televisionand noticed that they needed more time to ®nishtasks. Feelings of insecurity when performing socialtasks (e.g. shopping) were mentioned frequently,and this often led patients to avoid social contact.Twenty-two patients felt very uncomfortable about

the fact that their partners and friends seemed to beworried about them. Four subjects observed altera-tions in the behaviour of their friends such asavoidance of eye contact and expressions of pity forthem. However, three-quarters of all patients(n=37) reported broad improvements in theirperformance at work as a result of BONT/Atherapy. The medication resulted in 34 patientsfeeling more independent of other people, particu-larly in completing daily household chores, copingwith traf®c and in taking part in public events.Furthermore, 18 patients mentioned improvementsin their relations with relatives and friends (Fig. 1).

Discussion

The concept of quality of life has recently beenestablished as an important aspect of outcomemeasurement in the evaluation of the therapy ofpatients with chronic diseases. When quality of life isassessed in these patients an underestimation of thetotal impact of the disease is often described (17).Physicians and psychologists often rely on data thatis easily available and that provides informationabout the effectiveness of treatment concerningaspects such as physical health and length ofsurvival. Nevertheless, successful treatment doesnot necessarily mean that patients are free ofemotional stress including fears and depression.The measurement of quality of life has changed fromrecording mortality and morbidity rates and the useof simple scales to a multidimensional approachencompassing physical health (e.g. daily function-ing), mental health (e.g. perception of well-being)and social health (e.g. social relationships) (18, 19).This should especially be considered when dealingwith chronic diseases such as blepharospasm in

Fig. 1. Self-report of 51 patients with blepharospasm in the quality of life questionnaire.

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which symptoms can be improved dramatically butnot cured.

Previous literature regarding the effectiveness ofBONT/A in the treatment of blepharospasm hasbeen concerned primarily with the frequency ofside-effects (20, 21). It has been shown thatphysicians are not able to validly assess the patients'quality of life (17). Physicians tend to underestimatethe impact of disease on the patients' quality of life(22). The ®ndings that health care providers andfamily members could not accurately determine thepatients' feelings of well-being are not surprising(17), as quality of life represents a subjectiveevaluation of both the external conditions andtheir internal perception (23, 24). As Jacobson &Holland (25) stated, it is not the event itself butrather the individual's interpretation that causesstress. Quality of life should therefore be assessedby the patients themselves.

Aspects of subjective well-being or quality oflife have been neglected in patients with blephar-ospasm. Based on a multidimensional concept ofhealth-related quality of life we constructed aquestionnaire assessing different aspects of qualityof life. In the present study the subjective ratingsof patients who had been treated with BONT/Afor years indicated reductions in social andemotional well-being. Fears and depression werementioned frequently. Furthermore, the patientsreported restrictions in activities of everyday lifeand tendencies towards social withdrawal. BONT/A therapy received high acceptance in patients'ratings. The treatment gave patients a higherdegree of independence and ¯exibility. Thepositive effects of BONT/A therapy were, how-ever, accompanied by fear of a decreasing effectof BONT/A injections.

In summary, although the objective ®ndingsfollowing BONT/A injections in the treatment ofblepharospasm are appreciated by the patients, theirwell-being is affected by fears and depression.Perhaps because BONT/A therapy is generally aneffective treatment for blepharospasm, physiciansmay underestimate the adverse effects of the diseaseon the patients' quality of life. It is thereforeimportant that issues concerning quality of life areraised during patient consultation. By identifyingfactors likely to cause stress, appropriate supportivemeasures may be introduced.

Acknowledgements

This study was supported by the Robert Eckert Foundation.The authors are grateful to Drs FoÈtsch and Pfenningsdorffor their support.

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