Patient Preferences Towards Plain Language Resources During their Multiple Sclerosis Journey: A Qualitative Interview Study.

BACKGROUND AND

objectivePlain language resources (PLRs) provide medical research information in an easy-to-understand form for non-specialist audiences, including patients. Plain language resources can advance health literacy both at an individual patient level and at a public health level. We aimed to learn, through the lived experience of patients with multiple sclerosis, their plain language medical information-seeking preferences and needs. An additional objective was to identify motivators and deterrents to information seeking and recommendations to make PLRs more patient friendly.

methodsThis qualitative interview study was conducted among patients with a confirmed diagnosis of multiple sclerosis, ≥18 years of age, conversationally fluent in English, and resident in Switzerland. In-person or online interviews were conducted using an interview guide comprising a mix of open and closed-ended questions. We utilized a thematic analysis to interpret participants' plain language information-seeking preferences, evolving plain language information needs across their disease journey, evaluation and application of plain language information, and associated perceived motivators and deterrents. We applied Wilson's revised information behavior model as a deductive guide to frame the themes related to participants' preferences and experiences.

resultsFourteen participants were interviewed, leading to topic saturation. Participants ranged in age from 37 to 72 years. Years lived with multiple sclerosis ranged from <1 to 44 years. All participants indicated that their plain language information needs evolved from the pre-diagnostic phase, where they sought PLRs about their symptoms and potential diagnosis, to the post-diagnostic phase, where they sought PLRs about prognosis, treatment options, and adverse events. Strong motivators to seek PLRs were self-awareness, proactive attitude, and natural curiosity, while the common deterrents were a feeling of losing personal identity and self-preservation. Many participants shared that PLRs with general information on multiple sclerosis were available at the time of diagnosis; however, relevant PLRs on niche topics were less accessible. Healthcare practitioners, especially nurses, were the most common trustworthy primary information source and a way for most participants to validate information received from other sources. Websites of medical institutions and patient organizations were online trustworthy PLRs, according to several participants. Many participants preferred PLRs with text or text supported by explanatory visuals, and as physical copies. Participants' expectations on what level of detail in PLRs they found useful were highly variable. For PLRs to be impactful, several participants recommended that they be made easier to find, contain sufficient details, and cite peer-reviewed sources. Most participants also strongly recommended the need to make available PLRs aimed at family and caregivers of patients with multiple sclerosis.

conclusionsThis study offers novel insights into the plain language information-seeking preferences and needs of patients living with multiple sclerosis in Switzerland. We believe that our findings provide a strong rationale supporting the need to make available tailored, accessible, easy-to-understand PLRs to aid patients in their self-care and shared decision making.