Researchers at Northwestern University are seeking volunteers to participate in the pilot testing of a new quality measure for individuals with multiple sclerosis (MS) – Using Patient-Reported Outcomes to Drive Multiple Sclerosis Care. Pilot testing focuses on the development and testing of a performance measure focused on patient-reported outcomes (PRO) in the clinical setting and an MS-specific patient-reported outcome measure (PROM).
Both the performance measure and the PROM were developed by Northwestern University researchers with input from a multi-stakeholder workgroup.
Performance Measure Description:
The percentage of patients with multiple sclerosis age 18 or older who complete an initial PRO assessment, have a care plan developed based on the PRO results and patient priorities, and are re-assessed within 12 months. (For field testing this will be reassessment within 6 months).
MS-specific Patient-Reported Outcome Measure Description:
Using existing validated questionnaires, such as those in Neuro-QoL and PROMIS, the measure developers have compiled a brief MS-specific PROM assessing 14 clinically relevant PRO domains.
Additional information can be found in Using Patient-Reported Outcomes to Drive Multiple Sclerosis Care Measure and Field Testing Specifications.
We encourage neurology practices that care for patients with MS to become a pilot site. Participation is voluntary and offers pilot sites the opportunity to:
• Help advance performance measurement that reflects the outcomes that are most important to individuals with MS and uses information collected directly from those patients (i.e., PROs);
• Incorporate the patient’s perspective into clinical care using an MS-specific PROM, which was developed with substantial patient input;
• Integrate an MS-specific PROM within clinical workflows and electronic record systems; and,
• Gain early experience with the performance measure and suggest measure modifications.
We hope you will consider volunteering for this important effort to advance patient-centered measurement in MS. Participating practices are eligible for $10,000 in compensation ($5,000 paid after contract execution and $5,000 paid after successful data submission) plus an additional $5,000 for pilot sites that conduct manual chart audits to support rigorous measure testing.
Additionally, pilot sites will receive blinded results from the pilot. Results will not be publicly reported.
Pilot testing begins in September, 2018. If you are interested in potentially serving as a pilot site, please complete this brief survey by August 31, 2018. Survey responses will help us select eligible practices.
If you have questions, please contact Elijah Patten at 312-503-3446 or eapatten@northwestern.edu. We look forward to working with you!
About this Project
Northwestern University is leading this measure development project with support from the National Quality Forum (NQF) Measure Incubator®. This project is funded by Biogen.
