Table 1.
PERC participants PROM review by method and time allocations
| Review type | Psoriatic arthritis PERC | Ankylosing spondylitis PERC | ||
|---|---|---|---|---|
| In person | Teleconferences | In person | Teleconferences | |
| Participants | 12 | 5 and 7 per call date | 12 | 6 and 5 per call date |
| PROM reviewed |
HAQ-DI PROMIS-29 RAPID3 SF-36 |
PsAID-9 PsAID-12 |
ASQoL PROMIS-29 SF-36 |
BASDAI HAQ-S PROMIS-29 |
| Introduction to PROM presentation | 20–30 min led by SDC | Participants asked to review PROM prior to teleconference | 20–30 min led by SDC | Participants asked to review PROM prior to teleconference |
| Independent and group PROM review/discussions* | Led by MLP | Call facilitated by SDC and JA | Led by MLP | Call facilitated by SDC and JA |
| PROM review/discussions | 90 min including independent review followed by small group discussions | 45–50-min discussion with a 30-min independent pre-read of the PROM prior to teleconference | 60 min including independent review followed by small group discussions | 45–50-min discussion with a 30-min independent pre-read of the PROM prior to teleconference |
| Total time allocated | 120 min | 60 min | 90 min | 60 min |
The 12 PsA and 12 AS PERC participants were asked to participate in follow-up teleconferences for program updates and to discuss additional PROMs. Each disease-specific PERC was divided into two groups so that the number of participants on each teleconference was limited to maximize feedback and discussions. All 12 PsA PERC members were able to participate, as were 11 of 12 AS PERC members (one AS PERC member was not available to participate)
ASQoL Ankylosing Spondylitis Quality of Life, BASDAI Bath Ankylosing Spondylitis Disease Activity Index, HAQ-DI Health Assessment Questionnaire-Disability Index, HAQ-S Health Assessment Questionnaire for the Spondyloarthopathies, PERC Patient Engagement Research Councils, PROM patient-reported outcome measure, PROMIS-29 Patient-Reported Outcomes Measurement Information System-29, PsAID-9/PsAID-12 Psoriatic Arthritis Impact of Disease Questionnaire 9/12 domains, RAPID3 Routine Assessment of Patient Index Data 3, SF-36 36-Item Short-Form Health Survey
*Authors: Megan Leone-Perkins (MLP), Jill Abell (JA), Soumya D. Chakravarty (SDC)