How do stroke survivors and their carers use practitioners' advice on secondary prevention medications? Qualitative study of an online forum

Abstract

Background. Secondary prevention medications reduce risk of stroke recurrence, yet many people do not receive recommended treatment, nor take medications optimally. Objective. Exploring how patients report making use of practitioners' advice on secondary prevention medicines on an online forum and what feedback was received from other participants. Methods.Thematic analysis of the archive of Talkstroke (2004-2011), UK. Posts including any secondary prevention medication terms, General Practitioner (GP) and their replies were identified. Results. Fifity participants talked about practitioners' advice on secondary prevention medications in 43 discussion threads. Patients consulted practitioners for reassurance and dealing with side effects. Practitioners' advice varied from altering to maintaining current treatment. Three main themes emerged from the use of practitioners' advice: patients following advice (reassured, happy when side effects made tolerable, or still retaining anxiety about treatment); patients not following advice (admitting adherence on-off or stopping medications as side effects still not tolerable); asking other participants for feedback on advice received. Practitioners' advice was disregarded mainly when related to dealing with statin side effects, after one or two consultations. Themes for feedback involved sharing experience, directing back to practitioners, or to external evidence. Conclusions. Side effects of secondary prevention medications and statins in particular, cause anxiety and resentment in some patients, and their concerns are not always addressed by practitioners. Practitioners could consider more proactive strategies to manage such side effects. Forum feedback was appropriate and supportive of the practitioners' advice received. Our findings from peer-to-peer online conversations confirm and widen previous research.