Stefan participated in a plenary session and an oral presentation.

  • Plenary session : 
    Expert Panel Discussion on Patient-Centered Outcome Measurement: Routes, Roadblocks, and Roadmaps (Thursday 16th October)

The Expert Panel Discussion focused on the current state of play of patient-centered outcome measurement from the perspective of the three speakers.

We first described the significant progress that has been made during our working careers, and then flagged some concerning problems in the field, in particular, the ‘routes’ (i.e. competing methodologies) and ‘roadblocks’ (i.e., barriers preventing widespread take up of state of the art techniques).

As exemplars we introduced five key challenges:
1) which measurement paradigm to guide instrument development and evaluation?
2) how to recognize the limitations of psychometric “statistics”?
3) how best to measure change over time?
4) what sample sizes for scale development and evaluation studies?
5) how to overcome the legacy of ‘legacy’ instruments?

We then described how the current best practice recommendations from the US Food and Drug Administration (the ‘Roadmap’) enable the development of clinically meaningful patient focused outcome measures.

Laurie Burke, MPH, LORA Group, LLC, United States
Jeremy C. Hobart, PhD FRCP, Clinical Neurology Research, Plymouth Univ. Peninsula Schools of Medicine and Dentistry, United Kingdom
Stefan J Cano, PhD, Modus Outcomes, Newton, MA, United States

  •  Oral Presentation

How Qualitative Methods Can Be Used to Ensure Content Validity in a PRO Instrument for Patients with Cleft Lip and/or Palate who Vary by Age and Culture?: Development of the CLEFT-Q.
Tsangaris E, Wong KWY, Forrest CR, Pusic A, Cano SJ, Goodacre T, Klassen AF20th Annual Conference of the International Society for Quality of Life Research, Berlin, Germ