Clinical Research Oriented Workshop (CROW) Meeting: Dec 4, 2014

Present:  Marianne Burke, Sylvie Frisbie, Nancy Gell, Juvena Hitt, Kairn Kelley, Amanda Kennedy, Ben Littenberg, Connie van Eeghen

Start Up:  (Connie was trapped in Hewlett-Packard land, and missed this.)

1.                  Discussion Ben Littenberg reviewed the PROMIS29 survey, planned as the primary outcome measure of a PCORI research study for which the application is due in February.   

a.       The survey read well, although the presentation of raw scores is hard to interpret and may be misleading.  Version 2 has updated questions that include family and friends (matching a comment made in a recent patient feedback group working on this grant).

b.      The T-scores present the percentiles related to the individual responses (not the  number of standard deviations from the mean).  However, these totals appear to provide artificial ceilings and perhaps artificial floors for scores.  (Ben later corrected this: the T-scores represent a standardized score in 10ths of a sd with the mean set to 50. Given the T-score, you get the percentile by looking it up in the cumulative normal distribution.) 

c.       Ben and Juvena to explore further.  Face validity is good, content flow decent, format acceptable; scoring is mysterious.  Further research needed: website, NIH staff. Nancy has a colleague who might be of assistance.

2.                  Discussion: Connie shared the abstract of a manuscript in the process of a re-write after re-running all the data.  She shared 2 tables: description of patient-subjects (Table 3) and outcomes (Table 4).

a.       Table 3 data, describing the underlying population, is unusual in that it compares two time periods.  Consider one table for the 17 month period.  Move the bottom row (visits pppm) to the top of the result table. 

b.      The 12 month pre-window provides a conservative approach to assessing the change, relative to the 5 month post-window.  The 5 month post-window has a higher prevalence of older, sicker, and higher level of visits (i.e. frequent flyers) than the 12 month window has.

c.       Briefly discuss the new Table 3, then focus the discussion on Table 4.  Then discuss (without a new table) the changes in the population attributed to the intervention.

d.      Limitations: secular changes induced by the intervention

e.       Kaplan Meier plots: makes the lines show up differently when viewed in black and white

f.       Thank you, everyone!

3.                  Discussion: Next semester’s meeting plan for CROW

a.       Kairn to send out DoodlePoll

4.                  Next Workshop Meeting(s): Thursdays, 11:30 a.m. – 12:45 p.m., at Given Courtyard South Level 4.   Remember: the first 15 minutes are for checking in with each other.

a.       Dec 11: Kairn: manuscript (no Ben)

b.      Dec 18: Marianne: data collection tools (no Ben)

c.       Jan 8: TBD

d.      Jan 15: TBD

Recorder: Connie van Eeghen