Quality of Life in Age-Related Macular Degeneration - CNIB

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treatment groups showed significant improvements in NEIVFQ (near and distance activities and dependency) scores over one year compared with controls 142 . A oneyear study of the effects of pegaptanib sodium (Macugen) compared with sham treatment 143 showed improvements in some NEIVFQ subscale scores in the Macugen treated groups compared with controls but other subscales showed no change, possibly due to small subgroup sizes. Both of these abstracts refer inappropriately to QoL while actually reporting visual function. However, the results certainly look promising for QoL (providing that the experience of treatment with intraocular injections is not too distressing) even though QoL has yet to be measured. Recently, an uncontrolled study of a closely related drug, bevacizumab (Avastin) 144, reported favorable results in a retrospective case series of 79 people with subfoveal neovascular MD, with reduction of retinal oedema, pigment epithelial detachment and subretinal fluid and improvements in VA in eyes that were deteriorating despite previously being treated with PDT and/or Lucentis. No PROs were administered in this preliminary work. These recent developments with antiVEGF drugs suggest a more hopeful outlook for people with wet MD though further studies including PRO measures are required to determine the impact of the treatment and its effects on VA on patients. A small study (30 intervention,15 controls) evaluated the effect of carotenoids and antioxidant supplementation in people with intermediate or advanced MD 145 . After one year, people with intermediate MD showed stabilized VA, better VA than controls and improved NEIVFQ 39 visual function scores, while these deteriorated in the control group. There was no benefit found in the advanced MD group. 38
Several of these trials show promising results in terms of visual function but, while some have claimed to measure the impact of treatment on QoL, none has actually done so. 8. Future research A diagnosis of MD will inevitably impact not only on patients but on those people closest to them. There may be concerns about genetic transmission of the condition to sons and daughters. A partner or other family member is likely to experience anxiety about the diagnosis and prognosis. Worry about the future and the patient’s possibly deteriorating vision will affect those closest to him or her. Retired couples often enjoy shared interests and, where these are lost to the patient, they may also be lost to the partner. This may lead to resentment and frustration. There is also the possibility that people will overcompensate for the difficulties brought about by MD and make the person with MD unnecessarily dependent, preventing successful adjustment to the condition. People who develop MD are sometimes carers themselves and an inability to continue effectively in this role can lead to difficulties 146 . The caredfor person may then have to depend on more formal care, with the expense and disruption that it involves. People with MD may themselves have to be cared for. This sometimes entails moving in with their family and it is unlikely to be without consequences. There appears to have been no research carried out into this aspect of living with MD and findings from such studies may be helpful in showing how people with MD can most effectively be supported. 39
Page 1 and 2: Quality of life in agerelated mac
Page 3 and 4: Psychosocial interventions, includi
Page 5 and 6: Quality of life in agerelated mac
Page 7 and 8: “Quality of life is how good or b
Page 9 and 10: mistakenly concluded that MD has no
Page 11 and 12: selfreports of vision function, i
Page 13 and 14: distance VA score the patient is be
Page 15 and 16: The method of administration is a f
Page 17 and 18: health state for the rest of their
Page 19 and 20: 3. Impact of MD 3.1 Psychological w
Page 21 and 22: 20% at the time of the survey, was
Page 23 and 24: Index - wellbeing) 88 social supp
Page 25 and 26: cause of the greater distress. In c
Page 27 and 28: and a consequent fractured hip whic
Page 29 and 30: People with MD may not understand t
Page 31 and 32: adaptation. The intervention group
Page 33 and 34: VFQ) compared with controls (especi
Page 35 and 36: Distribution of aids was irregular
Page 37: acquired using TTO, were obtained b
Page 41 and 42: With new treatments being developed
Page 43 and 44: accounts of their own experiences a
Page 45 and 46: the planning of rehabilitation prog
Page 47 and 48: o continuing evaluation of the impa
Page 49 and 50: 11. Bradley C. Importance of differ
Page 51 and 52: 37. Wolffsohn JS, Cochrane AL. Desi
Page 53 and 54: 65. McNair DM, Lorr M, Droppleman L
Page 55 and 56: 92. Royal College of Ophthalmologis
Page 57 and 58: 122. Scanlan JM, Cuddeford JE. Low
Page 59: 147. Culham LE, Chabra A, Rubin GS.
Page 62 and 63: Appendix 1. Patient reported outcom
Page 64 and 65: Appendix 1. Patient reported outcom

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