Participants
Crystal Blyler Jean Campbell Sally Clay Patrick Corrigan Dianne Cote Zahira DuVall
Janine Elkanich Susan Essock Louetta Hix Matt Johnsen Sarah Lickey Sandy Lint Brian
McCorkle Betsy McDonel Carol Mussey Ruth Ralph Joe Rogers Mark Salzer Bonnie Schell James
Scott Carol Silverman Jean Stofer Greg Teague Sharon Togut Daphne Walker-Thoth Brian Yates
Tom Summerfelt
Measuring Symptoms
The purpose of this special teleconference was to clear up confusion related to the
measuring of symptoms in the common protocol. During the April face-to-face Steering
Committee meeting, the group unanimously decided to measure symptoms, and it established a
work group to select measure(s). The work group has had difficulty selecting
measure(s)
because there seemed to be some resistance to measuring symptoms. When some members agreed
to measure symptoms, they believed they were agreeing to measuring symptoms through the
self-report of study participants rather than through interviewer-rated instruments. Other
members believed that the inclusion of an interviewer-rated instrument to measure symptoms
would enrich the common protocol, which currently consists of all self-report instruments.
After clarification about the difference between self-report and interviewer-rated
instruments and some discussion about the pros and cons of measuring symptoms, the
Steering Committee unanimously (17 votes) passed the following motion which was made by
Joe Rogers, amended by Greg Teague, and seconded by Bonnie Schell:
That the Steering Committee adopt a practice of having as strong of a measure of
self-report on symptoms as possible in the common protocol, and that some study sites
include interviewer-rated instruments to measure symptoms for validation.
Betsy then moved that the Steering Committee return the task for the selection of
symptom measure(s) back to work group with the understanding that anyone from the Steering
Committee interested joining the work group is welcomed and that the measure(s) will not
exceed 15 minutes (approximately). The Steering Committee voted unanimously in favor of
the motion.
Mark Salzer, chair of the work group, asked that a new chair be selected because he was
overcommitted. Joe Rogers volunteered to serve as chair and it was suggested that Crystal
Blyler serve as co-chair. Crystal agreed if there were no objections from the Steering
Committee and if there were no rules that prohibited her from serving in this capacity.
Betsy will check with Neal Brown. No objections were voiced from Steering Committee
members.
Betsy moved that the work group submit its recommendation on self-report symptom
measure(s) to the Steering Committee by May 25. The motion was seconded and passed with no
objections.
Zahira DuVall said that it was hard to make a decision about instruments when some
members don't have copies of them. Jean Campbell said that if the people who have symptom
instruments would send them by overnight mail to the Coordinating Center that the Center
will, in turn, send two packets to each study site overnight to the PI and consumer
representative. The sites can then make additional copies. The Center will also set up a
teleconference for the work group for the middle of next week, if the chair will let it
know a time and date that is convenient for the members.
Symptoms Cluster
Joe suggested and Jean agreed that the Coordinating Center will take a proactive role
in helping to link the study sites interested in using an interviewer-rated instrument to
measure symptoms. Prior to the teleconference, several sites had expressed interest in
using such an instrument. These sites included California and Pennsylvania. Illinois and
Pennsylvania are looking at symptoms as outcomes.
Key Points of Discussion Prior to Vote on How to Measure Symptoms
Prior to the vote related to how to measure symptoms, Steering Committee members made
the following points:
1. Matt Johnsen: One could think about symptomotology at an early stage as one thing
COSP needs to take a count of because different people may have different reactions to
different programs.
2. Betsy McDonel: Inclusion of a symptoms measure would help COSP identify (1) what
populations are being served, and (2) information for those sites that are looking at
symptom reduction as an outcome.
3. Joe Rogers: For 25 years people have been organizing and trying to get funding for
self-help but have been told that COS don't know how to deal with seriously mentally ill
people in crisis and that clinicians are needed. In reality, it is a myth that COS don't
deal with the seriously mentally ill. If we don't have the information as to the degree of
study participants' "illness," we will again be criticized and claims will be
made that COS are not for the seriously mentally ill. The purpose of this study is to
prove whether or not COS fits into the system of care for people with serious and
persistent mental illness and not to show how COS are an alternative.
4. Jean Campbell: The Well Being Project did not measure symptoms and its findings were
minimized because we were not able to define the characteristics of the population served.
I always regretted that symptoms were not measured. Three reasons to measure symptoms are
(1) to collect outcome information, (2) to answer critics, and (3) to define the
population.
5. Carol Mussey: We, in Illinois, agree with some of what Joe says, and we are willing
to measure symptoms to show that people who come to GROW experience diminishing of
symptoms over time.
6. Carol Silverman: In California's experience using the BPRS, it found that once the
purpose of the instrument is explained to people, they generally don't object. Some of our
interviewers were consumers. There was no difference in reliability between consumer
raters and co-professional raters.
7. Dianne Cote: I like the CPI and thinking about COS using the BPRS freaks me out. COS
don't label consumers.
8. Susan Essock: I have problems believing that we can bring people in and train them
to administer the interviewer-rated instruments
5400
Arsenal Street