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Klin Monbl Augenheilkd 2010; 227(8): 646-652
DOI: 10.1055/s-0029-1245118
Übersicht

© Georg Thieme Verlag KG Stuttgart · New York

Neue Erkenntnisse zur unterschätzten Beeinträchtigung der Lebensqualität bei altersbedingter Makuladegeneration – ein Literaturüberblick

New Insights into the Underestimated Impairment of Quality of Life in Age-Related Macular Degeneration – a Review of the LiteratureB. Meyer-Ruesenberg1 , G. Richard1
  • 1Klinik und Poliklinik für Augenheilkunde, Universitätsklinikum Hamburg-Eppendorf
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Publikationsverlauf

Eingegangen: 10.12.2009

Angenommen: 19.12.2009

Publikationsdatum:
06. Mai 2010 (online)

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Zusammenfassung

Die altersbedingte Makuladegeneration (AMD) führt unabhängig von ihrem klinischen Erscheinungsbild bei den betroffenen Patienten zu erheblichen Visusminderungen bis hin zur Erblindung. Daher hat sie starke Auswirkungen auf das tägliche Leben der Patienten und führt zu massiven Einschränkungen ihrer psychischen Verfassung, Autonomie und Mobilität. Diese Einschränkungen wirken sich auf die Lebensqualität der Patienten aus. Der Begriff der Lebensqualität ist schwierig zu definieren. Er setzt sich aus unterschiedlichen Faktoren zusammen, die verschiedene Testverfahren zu messen versuchen. Neben dem allgemeinen Gesundheitsstatus und dem psychologischen Wohlbefinden spielt hier v. a. die visusabhängige Alltagsfunktionalität eine wichtige Rolle. Um den Einfluss verschiedener Erkrankungen auf die Lebensqualität vergleichen zu können, wurde die sog. Utility Analysis entwickelt. Sie legt eindrucksvoll die häufig unterschätzte Bedeutung der AMD für den Patienten dar und zeigt, dass die Einschränkungen durch die AMD vergleichbar mit anderen schweren Systemerkrankungen wie bösartigen Tumoren oder HIV sind. Gleichzeitig zeigt sich, dass die betreuenden Augenärzte die Beeinträchtigung der Patienten häufig erheblich unterschätzen. Verschiedene Therapieverfahren haben die Lebensqualität der Patienten beeinflusst, jedoch können weiterhin viele Patienten nicht behandelt werden. Sie profitieren von Rehabilitationsmaßnahmen wie der Versorgung mit technischen Hilfsmitteln oder psychosozialen Unterstützungsprogrammen. Weitere klinische Studien von hoher Evidenz unter Verwendung valider und vergleichbarer Testverfahren sind erforderlich, um Therapie und Rehabilitation zu optimieren und die Lebensqualität der Patienten messbar zu steigern.

Abstract

Different forms of age-related macular degeneration (AMD) can lead to massive visual impairment up to blindness. Therefore, AMD has a high impact on patients’ daily life and causes restrictions of their psychological well-being, autonomy and mobility. These restrictions influence their quality of life. It is difficult to define the term ”quality of life”. It consists of different aspects that can be measured with psychometric tests. Besides the general health status and the psychological well-being, the vision-specific functional status plays a central role for determining the quality of life of AMD patients. To compare the impact of different diseases on the quality of life, the utility analysis has been developed. It demonstrates the relevance of AMD for patients and shows that its impact on patients’ life is comparable to those of other systemic diseases like carcinoma or HIV. The impairment of patients’ quality of life by AMD is often underestimated by their attending ophthalmologists. Different medical treatments have influenced the quality of life of AMD patients. However, there is still a large group that cannot be treated. These patients benefit from rehabilitation with low vision aids or psychosocial interventions. Further clinical trials at a high evidence level using valid and comparable psychometric tests are necessary to improve the therapy for and the rehabilitation of AMD patients and to increase their quality of life.

Schlüsselwörter

altersbedingte Makuladegeneration - Lebensqualität - psychologisches Wohlbefinden - Utility Analysis - visusabhängige Alltagsfunktionalität

Key words

age-related macular degeneration - quality of life - psychological well-being - utility analysis - vision-specific functional status

Literatur

  • 1 Congdon N, O’Colmain B, Klaver C C. et al . Causes and prevalence of visual impairment among adults in the United States.  Arch Ophthalmol. 2004;  122 477-485
    Google Scholar
  • 2 Birk T, Hickl S, Wahl H W. et al . Development and pilot evaluation of a psychosocial intervention program for patients with age-related macular degeneration.  Gerontologist. 2004;  44 836-843
    Google Scholar
  • 3 Brown G C, Murphy R P. Visual symptoms associated with choroidal neovascularization. Photopsias and the Charles Bonnet syndrome.  Arch Ophthalmol. 1992;  110 1251-1256
    Google Scholar
  • 4 Wahl H W, Heyl V, Langer N. Quality of life by limited vision in old age: the example of age-related macula degeneration.  Ophthalmologe. 2008;  105 735-743
    Google Scholar
  • 5 Finger R P, Fleckenstein M, Holz F G. et al . Quality of life in age-related macular degeneration: a review of available vision-specific psychometric tools.  Qual Life Res. 2008;  17 559-574
    Google Scholar
  • 6 Lawton M P. Environment and Other Determinants of Well-Being in Older-People.  Gerontologist. 1983;  23 349-357
    Google Scholar
  • 7 Mitchell J, Bradley C. Quality of life in age-related macular degeneration: a review of the literature.  Health Qual Life Outcomes. 2006;  4 97
    Google Scholar
  • 8 Bradley C. Importance of differentiating health status from quality of life.  Lancet. 2001;  357 7-8
    Google Scholar
  • 9 Rabin R, Charro de F. EQ-5D: a measure of health status from the EuroQol Group.  Ann Med. 2001;  33 337-343
    Google Scholar
  • 10 Pauleikhoff D, Scheider A, Wiedmann P. et al . Neovascular age-related macular degeneration in Germany. Encroachment on the quality of life and the financial implications.  Ophthalmologe. 2009;  106 242-251
    Google Scholar
  • 11 Miskala P H, Bressler N M, Meinert C L. Relative contributions of reduced vision and general health to NEI-VFQ scores in patients with neovascular age-related macular degeneration.  Arch Ophthalmol. 2004;  122 758-766
    Google Scholar
  • 12 Cruess A, Zlateva G, Xu X. et al . Burden of illness of neovascular age-related macular degeneration in Canada.  Can J Ophthalmol. 2007;  42 836-843
    Google Scholar
  • 13 Zigmond A S, Snaith R P. The hospital anxiety and depression scale.  Acta Psychiatr Scand. 1983;  67 361-370
    Google Scholar
  • 14 Augustin A, Sahel J A, Bandello F. et al . Anxiety and depression prevalence rates in age-related macular degeneration.  Invest Ophthalmol Vis Sci. 2007;  48 1498-1503
    Google Scholar
  • 15 Williams R A, Brody B L, Thomas R G. et al . The psychosocial impact of macular degeneration.  Arch Ophthalmol. 1998;  116 514-520
    Google Scholar
  • 16 Tournier M, Moride Y, Lesk M. et al . The depletion of susceptibles effect in the assessment of burden-of-illness: the example of age-related macular degeneration in the community-dwelling elderly population of Quebec.  Can J Clin Pharmacol. 2008;  15 e22-e35
    Google Scholar
  • 17 Brody B L, Gamst A C, Williams R A. et al . Depression, visual acuity, comorbidity, and disability associated with age-related macular degeneration.  Ophthalmology. 2001;  108 1893-1900
    Google Scholar
  • 18 Waern M, Rubenowitz E, Runeson B. et al . Burden of illness and suicide in elderly people: case-control study.  BMJ. 2002;  324 1355
    Google Scholar
  • 19 Mitchell J, Bradley P, Anderson S J. et al . Perceived quality of health care in macular disease: a survey of members of the Macular Disease Society.  Br J Ophthalmol. 2002;  86 777-781
    Google Scholar
  • 20 Nispen R M, Boer de M R, Rens van G H. Additional psychometric information and vision-specific questionnaires are available for age-related macular degeneration.  Qual Life Res. 2009;  18 65-69
    Google Scholar
  • 21 Sharma van S, Oliver-Fernandez A. Age-related macular degeneration and quality of life: how to interpret a research paper in health-related quality of life.  Curr Opin Ophthalmol. 2004;  15 227-231
    Google Scholar
  • 22 Mangione C M, Lee P P, Gutierrez P R. et al . Development of the 25-item National Eye Institute Visual Function Questionnaire.  Arch Ophthalmol. 2001;  119 1050-1058
    Google Scholar
  • 23 Lindblad A S, Clemons T E. Responsiveness of the National Eye Institute Visual Function Questionnaire to progression to advanced age-related macular degeneration, vision loss, and lens opacity: AREDS Report no. 14.  Arch Ophthalmol. 2005;  123 1207-1214
    Google Scholar
  • 24 Riusala A, Sarna S, Immonen I. Visual function index (VF-14) in exudative age-related macular degeneration of long duration.  Am J Ophthalmol. 2003;  135 206-212
    Google Scholar
  • 25 Mitchell J, Bradley C. Design of an individualised measure of the impact of macular disease on quality of life (the MacDQoL).  Qual Life Res. 2004;  13 1163-1175
    Google Scholar
  • 26 Mitchell J, Wolffsohn J S, Woodcock A. et al . + Psychometric evaluation of the MacDQoL individualised measure of the impact of macular degeneration on quality of life.  Health Qual Life Outcomes. 2005;  3 25
    Google Scholar
  • 27 Brown G C, Brown M M, Sharma S. et al . The burden of age-related macular degeneration: a value-based medicine analysis.  Trans Am Ophthalmol Soc. 2005;  103 173-184
    Google Scholar
  • 28 Brown M M, Brown G C, Stein J D. et al . Age-related macular degeneration: economic burden and value-based medicine analysis.  Can J Ophthalmol. 2005;  40 277-287
    Google Scholar
  • 29 Brown G C, Brown M M, Sharma S. Difference between ophthalmologists’ and patients’ perceptions of quality of life associated with age-related macular degeneration.  Can J Ophthalmol. 2000;  35 127-133
    Google Scholar
  • 30 Mitchell J, Bradley C. Measuring quality of life in macular disease: What use are utilities?.  International Congress Series. 2005;  1282 654-658
    Google Scholar
  • 31 Lotery A, Xu X, Zlatava G. et al . Burden of illness, visual impairment and health resource utilisation of patients with neovascular age-related macular degeneration: results from the UK cohort of a five-country cross-sectional study.  Br J Ophthalmol. 2007;  91 1303-1307
    Google Scholar
  • 32 Zlateva G P, Javitt J C, Shah S N. et al . Comparison of comorbid conditions between neovascular age-related macular degeneration patients and a control cohort in the medicare population.  Retina. 2007;  27 1292-1299
    Google Scholar
  • 33 Luke M, Ziemssen F, Volker M. et al . Full macular translocation (FMT) versus photodynamic therapy (PDT) with verteporfin in the treatment of neovascular age-related macular degeneration: 2-year results of a prospective, controlled, randomised pilot trial (FMT-PDT).  Graefes Arch Clin Exp Ophthalmol. 2009;  247 745-754
    Google Scholar
  • 34 Cahill M T, Stinnett S S, Banks A D. et al . Quality of life after macular translocation with 360 degrees peripheral retinectomy for age-related macular degeneration.  Ophthalmology. 2005;  112 144-151
    Google Scholar
  • 35 Submacular surgery trials randomized pilot trial of laser photocoagulation versus surgery for recurrent choroidal neovascularization secondary to age-related macular degeneration: II. Quality of life outcomes submacular surgery trials pilot study report number 2.  Am J Ophthalmol. 2000;  130 408-418
    Google Scholar
  • 36 Sharma S, Hollands H, Brown G C. et al . Improvement in quality of life from photodynamic therapy: a Canadian perspective.  Can J Ophthalmol. 2001;  36 332-338
    Google Scholar
  • 37 Slakter J S, Stur M. Quality of life in patients with age-related macular degeneration: impact of the condition and benefits of treatment.  Surv Ophthalmol. 2005;  50 263-273
    Google Scholar
  • 38 Kyo T, Matsumoto Y, Tochigi K. et al . Assessment of the quality of life of patients with age-related macular degeneration after photodynamic therapy.  Nippon Ganka Gakkai Zasshi. 2006;  110 710-716
    Google Scholar
  • 39 Chang T S, Bressler N M, Fine J T. et al . Improved vision-related function after ranibizumab treatment of neovascular age-related macular degeneration: results of a randomized clinical trial.  Arch Ophthalmol. 2007;  125 1460-1469
    Google Scholar
  • 40 Leys A, Zlateva G, Shah S N. et al . Quality of life in patients with age-related macular degeneration: results from the VISION study.  Eye. 2008;  22 792-798
    Google Scholar
  • 41 Dixon J A, Oliver S C, Olson J L. et al . VEGF Trap-Eye for the treatment of neovascular age-related macular degeneration.  Expert Opin Investig Drugs. 2009;  18 1573-1580
    Google Scholar
  • 42 Hooper P, Jutai J W, Strong G. et al . Age-related macular degeneration and low-vision rehabilitation: a systematic review.  Can J Ophthalmol. 2008;  43 180-187
    Google Scholar
  • 43 Scott I U, Smiddy W E, Schiffman J. et al . Quality of life of low-vision patients and the impact of low-vision services.  Am J Ophthalmol. 1999;  128 54-62
    Google Scholar
  • 44 Brody B L, Roch-Levecq A C, Kaplan R M. et al . Age-related macular degeneration: self-management and reduction of depressive symptoms in a randomized, controlled study.  J Am Geriatr Soc. 2006;  54 1557-1562
    Google Scholar
  • 45 Brody B L, Roch-Levecq A C, Gamst A C. et al . Self-management of age-related macular degeneration and quality of life: a randomized controlled trial.  Arch Ophthalmol. 2002;  120 1477-1483
    Google Scholar
  • 46 Tasman W, Rovner B. Age-related macular degeneration: treating the whole patient.  Can J Ophthalmol. 2005;  40 389-391
    Google Scholar
  • 47 Bradley P, Bradley C. Peer support for people newly diagnosed with macular degeneration: a pilot study.  International Congress Series. 2005;  1282 211-215
    Google Scholar
  • 48 Bonastre J, Le Pen C, Anderson P. et al . The epidemiology, economics and quality of life burden of age-related macular degeneration in France, Germany, Italy and the United Kingdom.  Eur J Health Econ. 2002;  3 94-102
    Google Scholar

Dr. Birthe Meyer-Ruesenberg

Klinik und Poliklinik für Augenheilkunde, Universitätsklinikum Hamburg-Eppendorf

Martinistr. 52

20246 Hamburg

Telefon: ++ 49/4 07 41 05 23 01

Fax: ++ 49/4 07 41 05 78 03

eMail: b.meyer-ruesenberg@uke.de