Candidate for the Lee B. Lusted Student Prize Competition
Purpose: Research has suggested that patients with urinary symptoms associated with multiple sclerosis (MS) are reticent to discuss these symptoms with a health care provider. The feasibility of an online survey to measure the impact of bladder symptoms on health-related quality of life (HRQL) among community-dwelling patients with MS was assessed.
Method: An online cross-sectional survey was developed for administration to a convenience sample of US-residing MS participants. Several MS-specific patient advocacy organizations collaborated by posting a description of the study in electronic newsletters, websites, and affiliated social media pages. To ensure that participants completed the survey only once, internet protocol (IP) and email addresses were recorded. Participant contact information was stored in a separate dataset from the survey and kept secure and confidential. Participants completed the survey following screening for inclusion criteria (US resident, 18-89 years of age, self-reported physician diagnosis of MS, currently using medication to treat MS symptoms) and informed consent. Information pertaining to demographics, disease history and severity, productivity, urinary symptoms, and if applicable, urinary symptom treatment patterns was collected. General (Short Form 36 version 2 (SF-36v2)) and disease-specific (Overactive Bladder Questionnaire – Short Form (OAB-Q SF)) HRQL was assessed.
Result: The survey was fielded from January 1, 2011 through May 1, 2011. A total of 4,629 participants accessed the website, and 2,348 completed the screening process. Of the 1,700 completed surveys, 630 participants were excluded by the tracking system, leaving 1,070 viable survey submissions. The screening process was not completed by 2,281 participants: 1,932 participants did not complete informed consent, 344 consented but did not complete screening, and 5 actively did not consent. Of those eligible, 49 did not complete the survey, including 6 voluntarily ending early, 35 not returning to complete a partial survey within 72 hours, and 8 for other reasons.
Conclusion: Close collaboration with MS patient advocacy organizations is critical in recruiting MS participants with a diversity of symptoms to participate in an online research study. The anonymity of an online survey may be helpful in assessing the burden of an often embarrassing symptom such as incontinence in participants with an underlying debilitating disease. However, technological safeguards and careful screening processes are necessary to ensure that participants meet eligibility criteria, particularly when a financial incentive is offered.