Measuring Quality of Life in Macular Degeneration

  • J. Mitchell
  • C. Bradley
Reference work entry


 Patient-reported outcomes are increasingly used in research and clinical practice in ophthalmology as in other medical specialties.  Measures of health status, psychological well-being,  functional status, and visual function are frequently referred to as quality of life (QOL) measures and have been used as such in research into macular degeneration (MD). However, such patient-reported outcomes do not measure QOL, although the constructs may be related to or influence QOL. When inappropriate or insensitive measures are used as QOL measures, the findings can be misleading and may lead to incorrect management of patients. Care is needed in the selection of patient reported outcomes (PROs) for use in research and clinical practice to ensure that they are appropriate for the intended purpose. In addition, PROs should be psychometrically validated, demonstrating qualities including face, content and construct validity, internal consistency and test-retest reliability and responsiveness.

 Utility values obtained using methods such as  time trade-off and  standard gamble are used to calculate  quality adjusted life years and are frequently referred to as QOL measures. However, they do not measure QOL and give no impression of the ways in which MD or any other medical condition impacts on QOL. For older people, such as those with MD, the questions are particularly difficult to answer.

PROs have shown that MD has a considerable negative impact on the lives of people with the condition and on their families. The use of PROs is valuable in assessing the impact of clinical and rehabilitative interventions and other services for people with MD. Ideally a complementary combination of PROs would used for evaluation purposes to ensure considerate, individually tailored and effective management of this group of patients.


Visual Function Macular Degeneration Diabetes Treatment Satisfaction Questionnaire Standard Gamble Method Average Weighted Impact 

List of Abbreviations:


activities of daily vision scale


choroidal neovascularization


diabetes treatment satisfaction questionnaire


EuroQOL 5-dimension questionnaire


functional status


health status


health utility index 3


macular service satisfaction questionnaire


macular treatment satisfaction questionnaire


macular degeneration


National Eye Institute visual function questionnaire


National Institute for Health and Clinical Excellence


patient-reported outcome


quality adjusted life year


quality of life


short form 36


standard gamble


time trade-off


 visual acuity


12-item well-being questionnaire


World Health Organisation


  1. Beck AT, Ward CH, Mendelson M, Mock J, Erbaugh J. (1961). Arch Gen Psychiatry. 4: 561–571.PubMedGoogle Scholar
  2. Berdeaux G, Mesbah M, Bradley C. (2006). Value Health 9: A372–A373.Google Scholar
  3. Bradley C. (1994). Bradley (ed.) C. Handbook of Psychology and Diabetes: A Guide to Psychological Measurement in Diabetes Research and Practice. Harwood Academic Publishers, Chur, Switzerland, pp. 111–132.Google Scholar
  4. Bradley C. (2001). Lancet. 357: 7–8.PubMedCrossRefGoogle Scholar
  5. Bradley C, Mitchell J. (2006). Digest: J Macular Dis Soc. 2006: 31–34.Google Scholar
  6. Bradley C, Plowright R, Stewart J, Valentine J, Witthaus E. (2007). Health Qual Life Outcomes. 5: 57.PubMedCrossRefGoogle Scholar
  7. Bradley C, Todd C, Gorton T, Symonds E, Martin A, Plowright R. (1999). Qual Life Res. 8: 79–91.PubMedCrossRefGoogle Scholar
  8. Brooks R. (1996). Health Policy. 37: 53–72.PubMedCrossRefGoogle Scholar
  9. Brown G, Sharma S, Brown M, Kistler J. (2000a). Arch Ophthalmol. 118: 47–51.PubMedGoogle Scholar
  10. Brown GC, Brown MM, Sharma S. (2000b). Can J Ophthalmol. 35: 127–133.PubMedGoogle Scholar
  11. Brown GC, Sharma S, Brown MM, Kistler J. (2000c). Arch Ophthalmol. 118: 47–51.PubMedGoogle Scholar
  12. Brown MM, Brown GC, Sharma S, Kistler J, Brown H. (2001). Br J Ophthalmol. 85: 327–331.PubMedCrossRefGoogle Scholar
  13. Cahill MT, Stinnett SS, Banks AD, Freedman SF, Toth CA. (2005). Ophthalmology. 112: 144–151.PubMedCrossRefGoogle Scholar
  14. Childs AL. (2004). Am J Ophthalmol. 137: 373–375.PubMedCrossRefGoogle Scholar
  15. Childs AL, Bressler NM, Bass EB, Hawkins BS, Mangione CM, Marsh MJ, et al. (2004). Ophthalmology. 111: 2007–2014.PubMedCrossRefGoogle Scholar
  16. De Wit GA, Busschbach JJ, De Charro FT. (2000). Health Econ. 9: 109–126.PubMedCrossRefGoogle Scholar
  17. Dolan P, Roberts J. (2002). Soc Sci Med. 54: 919–929.PubMedCrossRefGoogle Scholar
  18. Espallargues M, Czoski-Murray CJ, Bansback NJ, Carlton J, Lewis GM, Hughes LA, et al. (2005). Invest Ophthalmol Vis Sci. 46: 4016–4023.PubMedCrossRefGoogle Scholar
  19. Feeny D, Furlong W, Torrance GW, Goldsmith CH, Zhu Z, DePauw S, et al. (2002). Med Care. 40: 113–128.PubMedCrossRefGoogle Scholar
  20. Hill AR, Aspinall P, Armbrecht AM, Dhillon B, Buchholz P. (2005). Int Congr Ser. 1282: 573–577.CrossRefGoogle Scholar
  21. Knudtson MD, Klein BE, Klein R, Cruickshanks KJ, Lee KE. (2005). Arch Ophthalmol. 123: 807–814.PubMedCrossRefGoogle Scholar
  22. Lindblad AS, Clemons TE. (2005). Arch Ophthalmol. 123: 1207–1214.PubMedCrossRefGoogle Scholar
  23. Mangione CM, Gutierrez PR, Lowe G, Orav EJ, Seddon JM. (1999). Am J Ophthalmol. 128: 45–53.PubMedCrossRefGoogle Scholar
  24. Mangione CM, Lee PP, Pitts J, Gutierrez P, Berry S, Hays RD. (1998). Arch Ophthalmol. 116: 1496–1504.PubMedGoogle Scholar
  25. Mangione CM, Phillips RS, Seddon JM, Lawrence MG, Cook EF, Dailey R, et al. (1992). Med Care. 30: 1111–1126.PubMedCrossRefGoogle Scholar
  26. Margolis MK, Coyne K, Kennedy-Martin T, Baker T, Schein O, Revicki DA. (2002). Pharmacoeconomics. 20: 791–812.PubMedCrossRefGoogle Scholar
  27. McGee HM, O’Boyle CA, Hickey A, O’Malley K, Joyce CR. (1991). Psychol Med. 21: 749–759.PubMedCrossRefGoogle Scholar
  28. Miskala PH, Bressler NM, Meinert CL. (2004). Arch Ophthalmol. 122: 758–766.PubMedCrossRefGoogle Scholar
  29. Mitchell J, Bradley C. (2001). Qual Life Res. 10: 465–473.PubMedCrossRefGoogle Scholar
  30. Mitchell J, Bradley C. (2004). Qual Life Res. 13: 1163–1175.PubMedCrossRefGoogle Scholar
  31. Mitchell J, Bradley C. (2005). Int Congr Ser. 1282: 654–658.CrossRefGoogle Scholar
  32. Mitchell J, Bradley C. (2006). Health Qual Life Outcomes. 4: 97.PubMedCrossRefGoogle Scholar
  33. Mitchell J, Brose L, Bradley C. (2007). International Society for Quality of Life Research meeting abstracts. []. The QLR Journal, A-120, Abstract 1150.
  34. Mitchell J, Wolffsohn JS, Woodcock A, Anderson SJ, McMillan CV, ffytche T, et al. (2005). Health Qual Life Outcomes. 3: 25.PubMedCrossRefGoogle Scholar
  35. Mitchell J, Wolffsohn JS, Woodcock A, Anderson SJ, ffytche T, et al. (2008). Am J Ophthalmol. 146: 447–454.Google Scholar
  36. Mitchell J, Woodcock A, Bradley C. (2004). Qual Life Res. 13: 1548 abstract.CrossRefGoogle Scholar
  37. Owen CG, Fletcher AE, Donoghue M, Rudnicka AR. (2003). Br J Ophthalmol. 87: 312–317.PubMedCrossRefGoogle Scholar
  38. Slakter JS, Stur M. (2005). Surv Ophthalmol. 50: 263–273.PubMedCrossRefGoogle Scholar
  39. Stein JD, Brown MM, Brown GC, Hollands H, Sharma S. (2003). Br J Ophthalmol. 87: 8–12.PubMedCrossRefGoogle Scholar
  40. Stevenson MR, Hart PM, Chakravarthy U, Mackenzie G, Bird AC, Owens SL, et al. (2005). Br J Ophthalmol. 89: 1045–1051.PubMedCrossRefGoogle Scholar
  41. Ware JE, Snow K, Kosinski M, Gaandek B. (1993). SF-36 Health Survey: Manual and Interpretation Guide. The Health Institute, New England Medical Center, Boston, MA.Google Scholar
  42. WHO. (2004, 19.01.2006). Retrieved 12/03/2006, from
  43. Williams RA, Brody BL, Thomas RG, Kaplan RM, Brown SI. (1998). Arch Ophthalmol. 116: 514–520.PubMedGoogle Scholar
  44. Woodcock A, Bradley C, Plowright R, ffytche T, Kennedy-Martin T, Hirsch A. (2004). Patient Educ Couns. 53: 365–383.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media LLC 2010

Authors and Affiliations

  • J. Mitchell
  • C. Bradley

There are no affiliations available

Personalised recommendations