Acoustic Neuroma (AN) Patients
for updating
the NIH consensus statement
on AN treatments

position paper
Draft 4, 9/5/99

(This statement has been developed by a large group of AN patients in an on-line mailing list, and constitutes our consensus about the needs of AN patients that should be addressed by the next NIH statement.)


The NIH consensus statement on AN treatments plays a major role in determining the treatment decisions made by newly diagnosed AN patients.  This statement (found at http://text.nlm.nih.gov/nih/cdc/www/87.html ) guides the advice they obtain from their diagnosing physician, and the specialist referrals that they get. The literature produced by the national association for AN patients is also based on this statement.

According to the NIH, "This statement is outdated and is no longer viewed by NIH as guidance for medical practice" (see http://odp.od.nih.gov/consensus/cons/087/087_intro.htm ). We agree that no longer reflects the state-of-the-art in AN treatments, and a new consensus statement is needed to ensure that treatment recommendations remain current.

We urge that the medical community come together and update the NIH consensus statement on AN treatment. The following is a list of recommendations that we particularly want to see emphasized in the new statement, to satisfy the needs of current and future AN patients:

  1. newly diagnosed AN patients be referred to providers of both micro- and radiosurgical AN treatments for the two opinions (while the last consensus statement recognizes both radiosurgery and microsurgery as valid options for AN treatment, current referral patters tend to lead patients directly to neurosurgeons, with a resulting microsurgical bias in the treatment decision process)

  2. observation be carefully considered and discussed as an alternative for older AN patients, those with smaller tumors and few symptoms, and those for whom the predicted remaining life span is less than the predicted time for the tumor to grow and cause significant problems (observation was recognized as an option in the last consensus statement, but patients reportedly are not well-informed in many cases about this option)

  3. quality of life (QOL) preservation is included in the goals of all AN treatments, so post-treatment QOL problems are systematically evaluated and properly addressed, for individual patients, as well as within the community at large;

  4. cognitive difficulties are included in the QOL assessment developed for AN (of all the common problems that affect the AN patient quality of life, this one seems to have been significantly discounted by physicians, and merits careful study so patients have a sense of short and long-term risks, and so that appropriate rehabilitative therapies can be provided when necessary)

  5. given that no AN treatment constitutes a "guaranteed cure", all post-treatment AN patients be prescribed an MRI regiment for life-long monitoring of their AN for possible recurrence or regrowth;

  6. a process is established for implementing a national registry of AN patients that was recommended in the last consensus statement, for the purpose of enabling truly long term studies comparing the outcomes of various treatments across various segments of patient population; such a registry would include for each AN patient an assessment of all the outcome factors (including QOL) as well as all data that might correlate with the outcome (such as tumor size, previous treatments, pre-treatment symptoms, problems not related to ANs, etc.);

  7. the data within the national registry be made available to patients, to aid in their treatment decision process.

According to the NIH, these consensus statements "are particularly useful for providing guidance when a controversy exists in differing therapeutic or diagnostic options and when the issue is of public as well as professional interest" (see http://odp.od.nih.gov/consensus/about/process.htm ). Acoustic Neuroma treatments fall under this category; even the question of just which parts of the last concensus statement are no longer current is a matter of significant contention among doctors, patients, and support groups. Until an updated statement is available, patients are likely to continue to receive outdated advice from their physicians and from national patient support organization, who do not feel qualified to resolve the controversies on their own.

Also according to the NIH, "The timing of the conference should neither be so early in the developmental course of a new technology that data are insufficient" (ibid). Although we realize that there are very promising AN treatments for which the data may be considered insufficient, we believe there are enough data to allow a new consensus based on the above recommendations. We believe that it is preferable to supplement such a statement later as more data becomes available, rather than delay the consensus building process further.

 

Last Edited: Wednesday, October 30, 2002