To: ALL
I am involved in a study to learn how HMOs and insurance companies
decide to cover new technologies and we are looking at pallidotomy (and
treatments for a few other conditions) to try to understand this
process.
Recent comments on this list about pallidotomy and its after effects
brought out a lot of interesting and important things, and I would like
to hear what more people have to say. I plan to retrieve any archived
material if I can get the reference. But in addition, if anyone has
experience you would be willing to write about, please post it to the
list or to my personal email address. If you write to me personally, be
assured that your privacy will be kept confidential.
I am wondering about the following:
1. How you first learned about pallidotomy
2. Have you talked to your internist, neurologist or a
neurosurgeon about it and what you were told
3. Were you advised to have/not to have one, and what did you
think about that
4. If you have had a pallidotomy (or two) indicate where, how it
went, how you feel now, and what you think it did. Also, did you feel
you knew what you needed to beforehand?
5. HMOs/insurers around the country deal with pallidotomy in
different ways; what has your experience been?
6. Anything else that's part of your experience?
This is not a formal survey, however, anecdotal material would improve
the research, by showing how things look from the patients' side.
Obviously, no one should feel pressure to respond but if you do respond,
it will certainly be helpful. If you have any questions about this
project, don't hesitate to ask.
If I spot any trends I will let you know, and if I stumble on any new
developments, I'll post those, too.
I hope to hear from a number of you, people with PD as well as
caregivers. Please try to reply by December 5, as after that I will be
out of email touch for awhile.
Many thanks in advance for your help. I've been reading the entries for
only the past few days but I already know a great deal more.
Susann Wilkinson, M.P.H. ([log in to unmask])
Research Consultant at
Harvard Pilgrim HC &
Harvard Medical School
Boston
