Joined
·
248 Posts
Hi David,
Let me briefly outline the national HPPD study. You may want to post
this on your bulletin board.
Seems to me that what's needed most is the construction of a
psychological inventory that would measure various dimensions of the
whole HPPD experience. By that I mean not only the visual and
perceptual aspects of HPPD, but also various other symptoms, like
depression, suicidal ideation, and even symptoms of traumatic stress
that could accompany the disorder. We may also wish to take a look at
something like social support and family conflict, since these may
moderate the severity of the disorder. Commonsense would suggest that
given two individuals with equal visual impairment, the person with
greater social support should experience lower levels of hopelessness
and helplessness, two cardinal symptoms of depression.
We may also wish to revisit the vision simulators, include some of
those in the study, and then package these with the psychological
inventory that docs will actually use in their assessments. What I'm
thinking is that any comprehensive clinical assessment of HPPD ought
to include the vision simulators, since this makes it much easier for
clinicians to empathize with the condition. We may not be able to get
the simulations exact, but the purpose of the vision simulators isn't
necessarily to be exact...it's to give people enough of a simulation
that words can take them the rest of the way when explaining their
vision to others.
We may also wish to correlate different kinds of visual phenomena with
levels of psychological impact. For example, it could be that certain
kinds of visual phenomena are well tolerated, while others aren't. My
experience with patients with post-LASIK complications suggests, for
example, that any amount of double vision can be experienced as
debilitating.
In terms of the psychometrics, I would suggest using the Rasch model
to derive the scales. Older techniques which use Cronbach's alpha do
generally produce useful results, but they do not necessarily lead to
uni-dimensional scales with a good distribution of item difficulties,
and that's what necessary to quantify the disorder well at every point
along its severity. We don't want to end up with scales that measure
the disorder only at the more severe levels, for example.
Once we reach this point, we'll have a set of scales that 1) can be
used by the individual clinician to assess an HPPD patient, 2) can be
used by a researcher who wants to further investigate the syndrome,
and 3) we'll have vision simulators that allow the HPPD patient to
communicate their internal world directly to others. That should go a
long way toward validating HPPD as a genuine diagnostic entity.
Roger
This is it. This is the most comprehensive research project NODID or ANY research has ever taken on HPPD and will have a significant impact on our future. NODID's web site will be up again, and i will explain how you can help. This is extremely serious project, and is already is discussion phases. It can be costly, but I am sure if Dr. David and I present a detailed list of expenses, individuals will step up and take action with us.
You have asked for this research since 1990's, and here it is. It is not a cure, but as Roger said, read all of the possible impacts it can have on you as an individual and how to develop treatment plans.
- David
Let me briefly outline the national HPPD study. You may want to post
this on your bulletin board.
Seems to me that what's needed most is the construction of a
psychological inventory that would measure various dimensions of the
whole HPPD experience. By that I mean not only the visual and
perceptual aspects of HPPD, but also various other symptoms, like
depression, suicidal ideation, and even symptoms of traumatic stress
that could accompany the disorder. We may also wish to take a look at
something like social support and family conflict, since these may
moderate the severity of the disorder. Commonsense would suggest that
given two individuals with equal visual impairment, the person with
greater social support should experience lower levels of hopelessness
and helplessness, two cardinal symptoms of depression.
We may also wish to revisit the vision simulators, include some of
those in the study, and then package these with the psychological
inventory that docs will actually use in their assessments. What I'm
thinking is that any comprehensive clinical assessment of HPPD ought
to include the vision simulators, since this makes it much easier for
clinicians to empathize with the condition. We may not be able to get
the simulations exact, but the purpose of the vision simulators isn't
necessarily to be exact...it's to give people enough of a simulation
that words can take them the rest of the way when explaining their
vision to others.
We may also wish to correlate different kinds of visual phenomena with
levels of psychological impact. For example, it could be that certain
kinds of visual phenomena are well tolerated, while others aren't. My
experience with patients with post-LASIK complications suggests, for
example, that any amount of double vision can be experienced as
debilitating.
In terms of the psychometrics, I would suggest using the Rasch model
to derive the scales. Older techniques which use Cronbach's alpha do
generally produce useful results, but they do not necessarily lead to
uni-dimensional scales with a good distribution of item difficulties,
and that's what necessary to quantify the disorder well at every point
along its severity. We don't want to end up with scales that measure
the disorder only at the more severe levels, for example.
Once we reach this point, we'll have a set of scales that 1) can be
used by the individual clinician to assess an HPPD patient, 2) can be
used by a researcher who wants to further investigate the syndrome,
and 3) we'll have vision simulators that allow the HPPD patient to
communicate their internal world directly to others. That should go a
long way toward validating HPPD as a genuine diagnostic entity.
Roger
This is it. This is the most comprehensive research project NODID or ANY research has ever taken on HPPD and will have a significant impact on our future. NODID's web site will be up again, and i will explain how you can help. This is extremely serious project, and is already is discussion phases. It can be costly, but I am sure if Dr. David and I present a detailed list of expenses, individuals will step up and take action with us.
You have asked for this research since 1990's, and here it is. It is not a cure, but as Roger said, read all of the possible impacts it can have on you as an individual and how to develop treatment plans.
- David
