Patient-Voice RWE: Comparative Burden Collected From an Online Social Platform
Author(s)
Cao-Silveira V1, Bachman S1, Ray S1, Michelson M2
1The Mighty, Glendale, CA, USA, 2The Mighty, La Canada, CA, USA
Presentation Documents
OBJECTIVES:
The Mighty, a healthcare-based social community of ~3.5M patients with predominantly chronic, rare and mental-health conditions, derives RWE insights through a combination of surveys and linguistic analysis. We leveraged The Mighty to compare patient-reported burden across four conditions: Schizophrenia (S), Inflammatory Bowel Disease (IBD), Ehlers-Danlos syndrome (EDS), and Multiple Sclerosis (MS), demonstrating online platforms as a patient-centric source of RWE.METHODS:
Patients self-identify into conditions by joining condition-specific communities. From May 9, 2022 – May 20, 2022 we fielded 661 responses to a 5-10 minute survey across the condition communities ( (SZ), N=41; (IBD), N=356; (EDS), N=194; (MS), N=70). We believe patients are truthful given they speak online about correct medications and side effects.RESULTS:
Our analysis focused on productivity and out-of-pocket expenses, in addition to “top burdens” associated with each condition. For productivity, 55% of IBD, 71% of EDS, 59% of MS and 66% of SZ patients indicated they had to “miss work or school” to manage their condition. Quantifying that, the most common answer for IBD patients was missing 1-2 days per month (31%), while 54% of EDS, 63% of MS and 70% of SZ had to “take a leave or stop completely.” In addition to lost productivity, 34% of IBD, 31% of EDS, 29% of MS and 22% of SZ patients spent at least $1,000 out-of-pocket to manage their condition. Regarding top challenges, 88% of EDS patients identified “finding a specialist,” while 76% of MS patients stated the “impact on mental or emotional health” (similarly high for SZ patients at 60%). For IBD and SZ patients, the top challenge was “finding an effective treatment plan” (64% and 70%, respectively).CONCLUSIONS:
Here we demonstrate that patients in online platforms are willing to participate in burden analyses, setting a foundation collecting patient-centric RWE.Conference/Value in Health Info
2022-11, ISPOR Europe 2022, Vienna, Austria
Value in Health, Volume 25, Issue 12S (December 2022)
Code
PCR114
Topic
Economic Evaluation, Methodological & Statistical Research, Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes, Survey Methods, Work & Home Productivity - Indirect Costs
Disease
SDC: Gastrointestinal Disorders, SDC: Mental Health (including addition), SDC: Neurological Disorders