MEETING MINUTES
Meeting Place: Wisconsin Family Ties
Participants present: Jackie Baldwin, Paula Buege, Mike Bachhuber, Bill Benedict, Lori Krinki and Joann T.Stephens. Donna Wren, was unable to attend, but agreed to share her comments about: Robert Whitaker’s book, Part 3, Chapter 6 soon.
Bill began this meeting by thanking all those present for taking on this assignment and for their attendance. Special thanks were given to Paula for helping to arrange the best date for this meeting and to Lori for providing the meeting location and telephone hookup.
The first forty-five minutes of the meeting went by much too quickly as we each took turns talking about our reading assignment, but it was well worth it. Several points of concern and questions helped us considerably to better clarify this advocacy project’s much narrower mission: To help inform all Wisconsin Council on Mental Health members of the importance of long-term mental health patient outcome findings, and using this knowledge when reviewing policies/grants and best practice service standards. (For those interested, below I have also added a summary of this reading assignment.)
Following the discussion members gave attention to the project’s July 30, 2011 timetable which called for Council action on his request by July 30, 2011. While Bill expressed thanks and appreciation for Council cooperation thus far for what has already been accomplished to date, including both his two Council meeting visits and presentation to both the Adult Quality and Policy and Legislative Committees, however, he expressed concern with the progress made to date.
While the earlier discussion of Whitaker’s book was enthusiastic and compelling, efforts to identify what Council action might be most effective proved to be more challenging. The following member suggestions were considered: 1.) conduct more awareness- raising educational opportunities for Council members. Perhaps a panel discussion and Q&A meeting at a Council meeting; 2.) Ask Bill to present a concise summary of long-term study findings for each of the four major mental disorders and ADHD, 3) Establish a long-term patient outcome sub-committee composed of members from each of the Council Committees to be a resource and advisory group to the Council., 4) Prepare a Council letter supporting greater attention to long-term patient findings to the Department and funding sources.5. The Council would recommend to the Department IT Unit long-term patient functioning indicators to be including in the existing service information system; Finally, 6.) recommend that this project be referred outside the Council to a state-wide patient peer organization.
With respect to the latter suggestion, Bill noted that after again carefully reviewing the Council’s mission and membership make-up that he was more than ever convinced that this patient advocacy project belongs with the Wisconsin Council on Mental Health.
Group members agreed to report back to their respective Committees on this meeting and the suggestion presented: Meeting closed at 3 PM
The following is a summary review of the reading content discussed by group members:
(In order to share the nature of the reading content discussed, please note below the summary contained in Chapter 6, “The Case for Neuroleptics” and their effectiveness in the short-term and long-term. Whitaker states that “Once these anti-psychotic drugs were proven to be effective in the short-term, attention soon turned to determining, how long schizophrenia patients should stay on the medication?
To investigate this question, they ran studies that, for the most part, had this design: Patients who were good responders to the medication were either maintained on the drugs or abruptly withdrawn from them. Many such studies were done and showed good results with 53 percent of the drug-withdrawn patients, relapsed within ten months versus 16 percent of those maintained on the medication.
Based upon this research, an investigator summarized these findings this way: “The efficacy of these medications in reducing the risk of psychotic relapse has now been well documented.” Furthermore, as late as 2002 John Geddes, a prominent British researcher, wrote in the New England Journal of Medicine, “Anti-psychotic drugs are effective in treating acute psychotic symptoms and preventing relapse.”
Whitaker however claimed he saw “a hole in this evidence,” and cites another prominent investigator of the New York State Psychiatric Institute, Joseph Zubin who earlier in a 1956 conference warned that when it came to evaluating a therapy for a psychiatric disorder, a six-week study induced a kind of scientific myopia. It would be foolhardy to claim a definite advantage for a specified therapy without a two to five-year follow-up,” he said. (Please note the attachment which gives the differences between a clinical trials study versus a long-term study.)
Now with respect to the hole in the evidence, an investigator, Liza Dixon, at the University of Maryland School of Medicine in 1995, goes on to add that “Little can be said about the efficacy and effectiveness of conventional antipsychotics on non-clinical outcomes. Well-designed long-term studies are virtually nonexistent, so the longitudinal impact of treatment with conventional antipsychotics is unclear.”
As late as 2002 an editorial in European Psychiatry, a professor of psychiatry at the University de Montreal, Emmanuel Stip had this to say: “After fifty ears of neuroleptics, are we able to answer the following simple question: Are neuroleptics effective in treating schizophrenia/” There was, he said “no compelling evidence on the matter, when ‘long-term’ is considered.”
Out of the following context Whitaker, after reviewing medical and scientific journals going back over fifty years, then goes on to agree that there is no long-term data to be reviewed. Whitaker is not easily satisfied however, and goes on to say that “it is in fact possible to piece together a story of how antipsychotics alter the course of schizophrenia. He suggests that the story to answer this question begins, quite appropriately, with the NIMHs follow-up study of the 344 patients in its initial nine-hospital trial.
Most briefly, this NIMH study found that regardless of what treatment they had received in the hospital, they were not faring so badly. At the end of one year, 254 were living in the community, and 58 percent of those who according to their age and gender, could be expected to work were in fact employed. He then notes, that at this very first moment in the scientific literature, there is the hint of a paradox. “While the drugs were effective over the short term, perhaps they made people more vulnerable to psychosis over the long-term, and thus the higher re-hospitalization rates for drug-treated patients at the end of one year.
Partly as a result of these findings, soon the NIMH investigators were back with another surprising result. In two drug withdrawal trials, both of which included patients who weren’t’ on any drug at the start of the study. Relapse rates rose in correlation with drug dosage. Only 7 percent of those who had been on a placebo at the start of the study relapsed, compared to 65 percent of those taking more than five hundred milligrams of the chlorpromazine before the drug was withdrawn. “Relapse was found to be significantly related to the dose of the tranquilizing medication the patient was receiving before he was put on placebo---the higher the doses the greater the probability of relapse,”)
Out of the above summarized context Lori did however begin our group’s discussion with a question relating to the validity and usefulness of findings derived from a retroactive study by two psychiatrists at Boston Psychopathic Hospital---J. Sanbourne Bockover and Harry Solmon. In their study they found that 45 percent of the patients treated in 1947 at their hospital hadn’t relapsed in the next five years and 76 percent were successfully living in the community at the end of that follow-up period.
In contrast, only 31 percent of the patients treated at the hospital in 1967 with neuroleptics remained relapse-free for five years, and as a group they were much more “socially dependent” on welfare and needing other forms of support. They concluded, that their extended use (neuroleptics) in aftercare may prolong the social dependency of many discharged patients. Part of Lori’s concern had to do with the two comparison groups used and the appropriateness of the two very different follow-up dates.
(Why do we need more and better long-term mental health patient follow-up studies: They may help us to more objectively and better determine what forms of care are strongly associated with fewer relapses, or with higher global functioning scale results. Or they may provide us with more and better information about what is the optimum dosage and duration of care for different diagnostic mental health populations? How do long-term continuous medication regimens compare with more episodic or as-needed medication practices?
Finally, we may be able to better determine what kinds of mental health outcomes are correlated with economic independence, physical health, quality of life satisfaction, family and community engagement, and mortality rates.)
Respectively submitted,
William R. Benedict
Mental Health Patient Advocate
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