Huntington's families frequently complain about inadequate treatment given by general physicians who have little experience with the disease. Dr. Goodman discusses possible reasons for this situation and suggests a solution that could improve treatment.
As a general physician, I look forward to reading Drs. R. Bonelli and P. Hofmann's HD treatment reviews. In the most recent one published a few months ago, they list and discuss all studies for chorea and psychiatric symptoms that have been published in scientific journals since 1990 [Bonelli RM 2007]. The results? They found very little that was new from the prior decade, and concluded that treatment for Huntington's still relies on the common sense of physicians. Why is this? It is because treatment studies are so limited that HD experts can't make evidence-based treatment recommendations based on clinical trials for any symptom. This common sense situation can result in undertreatment of symptoms, particularly outside of HD specialty centers.
The "Common Sense" Vicious Cycle: "Common sense"means that doctors have no medical guidelines to teach or to follow, but must learn by experience what works. "Common sense" treatment is not taught in medical school. Even in residency and hospital training, the vast majority of doctors, even many neurologists, are not taught Huntington's treatment by HD experts. Nor can they find it easily in standard textbooks or the accessable scientific literature. What this really means is that many doctors don't learn that there are treatments for HD symptoms. This in turn can lead to trial and error treatment, or worse to the view that HD people are untreatable.
Breaking the Cycle: The best way to break the cycle is to do clinical trials that test and compare present treatments. But realistically, we know that such trials are not likely to happen; they are not high priority when there is limited funding.
What is the "next best" way? A practical solution is to create guidelines for the treatment of Huntington's symptoms by collecting, combining and publishing the experience of HD physicians. This approach has been used for other medical conditions for which there is inadequate clinical trial information [Alexopoulos GS 2005] [Alexopoulos GS 2004].
In the absence of clinical trial answers, this type of information could be used to improve the quality of care for Huntington's people.
Bonelli RM, Hofmann P. A systematic review of the treatment studies in Huntington's disease since 1990. Expert Opin Pharmacother. 2007 Feb;8(2):141-53. PubMed abstract
Alexopoulos GS, Jeste DV, Chung H, Carpenter D, Ross R, Docherty JP. The expert consensus guideline series. Treatment of dementia and its behavioral disturbances. Introduction: methods, commentary, and summary. Postgrad Med. 2005 Jan;Spec No:6-22. PubMed abstract
Alexopoulos GS, Streim J, Carpenter D, Docherty JP; Expert Consensus Panel for Using Antipsychotic Drugs in Older Patients. Using antipsychotic agents in older patients. J Clin Psychiatry. 2004;65 Suppl 2:5-99; discussion 100-102; quiz 103-4. PubMed abstract