Quality of Life in Age-Related Macular Degeneration - CNIB

Although there has been research into LVA provision and training, only one
study was found that reported investigation of the usefulness of specific
devices 147 . The study reported that, in general, conventional optical aids were
preferable to head­mounted devices for older users. However, participants did
not select the devices they tried but were randomised to two of four devices. It
may have been more informative if people had been able to choose which
devices they tried, so overcoming any antipathy towards a particular device.
More research is needed into the benefits of aids such as closed circuit
television, portable electronic magnifying devices and voice­activated
computer software.
In the UK several hospital eye clinics make arrangements for volunteers with
MD to set up a hospital volunteer support service to provide immediate
information and support for people newly diagnosed with MD. Anecdotal
evidence suggests that these services have been valuable and much
appreciated by those who have been able to talk to volunteers and make
contact with local MD groups and LVA services. A carefully designed
evaluation study of the existing hospital volunteer services is needed including
clinics with and without such services and further evaluation following
introduction of new volunteer services where there were none previously. The
MacSSQ measure of satisfaction with the service provided has been designed
for such a study and may supply compelling evidence to encourage hospital
eye clinics to be more open to such innovations, providing much needed initial
help and support to bewildered patients. Peer support groups such as those
pilot tested in Leicester 135 , recruiting via hospital volunteers, also warrant
evaluation in larger scale intervention programmes.
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