Patient involvement in the development of PROMs within the MS Field: A systematic review
This review reports on the development of patient-reported outcome measures (PROMs), published within the past ten years, for people with multiple sclerosis (PwMS). Moreover, this review evaluates the extent to which patient participation was integrated in the development of the PROMs. A systematic review was conducted, and four relevant articles were extracted, from which nine PROMs were identified. Patient involvement in the development phase was identified in three PROMs. The results emphasize the need for more patient involvement in the development of new MS-specific PROMs to ensure that the measures reflect the needs and priorities of PwMS.
Related content
-
Policy & Measurement
Green, Yellow, Red: Creating an Experience with Feedback Buttons
Stacy Palmer, Senior Vice President and COO of The Beryl Institute, joins Steven Peltzman, CEO of FeedbackNow, to explore how their innovative feedback devices are transforming the healthcare experience. Tune in as Peltzman discusses the profound impact of empowering patients with a sense of control in situations that often feel beyond their grasp.
Learn more -
Policy & Measurement | Quality & Clinical Excellence
We need to be the patient in the room
Transgender activist Emily Newberry joins Director of Community Experience, Amy Kwiatkowski to share her multi-decade journey of acceptance and understanding and how it led her to the field of patient experience and advocacy. Listen as Emily describes how her own experience navigating the health care system as a transgender woman inspired her to be persistent
Learn more -
Culture & Leadership | Policy & Measurement
Impact of Volunteer Programs: What Are We Measuring and Who Are We Telling?
Moderator: Terri Ipsen, CPXP | Director, Content, The Beryl Institute | Editorial Coordinator, Patient Experience Journal Panelists: Roseanna Galindo, ECBA, CAVS | Former Director of Volunteer & Guest Services at Enloe Medical Center | Currently Research Affiliate/Lecturer, California State University Chico/College of Communication Seth Hinrichsen, Volunteer, Utah Valley Hospital Erica Luciano, Program Manager, UChicago Medicine
Learn more