Use of an Online Community to Develop Patient-Reported Outcome Instruments: The Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ)

BACKGROUND Patients with multiple sclerosis (MS) may face barriers, such as treatment fatigue, memory problems, or side effects, that may influence their adherence to medication. OBJECTIVE The objective of our study was to use an online community to develop a self-report questionnaire to quantify adherence and barriers to achieving adherence, that is specific to MS disease-modifying treatments (DMTs) and predictive of missed doses. METHODS A review of the scientific literature and analysis of discussions between MS patients on PatientsLikeMe.com were used to generate survey items salient to patients. Cognitive debriefing was used to refine the items. The Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ) contains 30 questions in three subscales: Barriers, Side Effects, and Coping Strategies. RESULTS MS patients completed an online survey (response rate: 431 of 1209 invited, 35.7%). Between 16% (14/86) and 51% (51/100) of MS patients missed at least 1 dose of their DMT in the previous 28 days, with significant between-treatment differences. The MS-TAQ Barriers scale was positively correlated with the proportion of doses missed (r = .5), demonstrating a stronger relationship between adherence and perceived barriers than was found with clinical or demographic variables (r ≈ .3). The Coping Strategies subscale was negatively correlated with missed doses (r = -.3), suggesting that use of more coping strategies is associated with higher adherence. CONCLUSIONS Online communities can provide domains of interest and psychometric data to more rapidly develop and prototype patient-reported outcome instruments. The MS-TAQ offers patients and clinicians a simple method for identifying barriers to adherence, which may then be targeted through interventions.