How do stroke survivors and their carers use GP advice on secondary prevention medications? Insight from an online forum

Talk Code: 
Anna De Simoni
Nkeonye Judith Izuka (1), Matthew Alexander (2), Chantal Balasooriya-Smeekens (2), Jonathan Mant (2), Anna De Simoni (1)
Author institutions: 
(1) Centre for Primary Care and Public Health, Barts and The London School of Medicine and Dentistry, Yvonne Carter Building, QMUL, London; (2) Primary Care Unit, Department of Public Health, University of Cambridge School of Clinical Medicine, Cambridge.


Secondary prevention medications (SPM) reduce risk of stroke recurrence, yet many people do not receive recommended treatment, and/or take medications optimally. Studying how patients use GPs’ advice on such medications might shed light on why this is so. This study explored whether GPs' advice on SPM was discussed in an online forum, what use patients made of the advice and what feedback they received from other users.


A word list of unique terms of the archive file of Talkstroke (the Stroke Association forum, 2004-2011) was generated using AntConc3.2.4. Terms related to SPM were selected (e.g. Amlodipine, statin), including misspelling (e.g. Asprin). Posts including both SPM terms and ‘GP’ were identified. Characteristics of participants were retrieved within posts. Thematic analysis and judgements on advice were independently performed by 2 authors. The advice provided was judged appropriate if in keeping with current recommendations for SPM treatment.


50 users talked about GP advice on SPM in 43 discussion threads: 27 females, 21 males, 2 sex not stated, mean age at stroke 51 years (SD14), mean time after stroke 2 years (SD4). Patients’ main reasons for asking GP advice were reassuring themselves they were on correct SPM treatment or dealing with side effects. GP advice varied from starting/stopping medications, changing drug regimen, suggesting persisting with treatment or providing advice in special situations like flying. Three main themes emerged from the use of GP advice: patients following advice (some reassured, some happy when side effects made tolerable, some still retaining anxiety about treatment, some feeling humbled); patients not following GP advice (admitting adherence on-off, stopping medications as side effects still not tolerable, checking themselves on the British National Formulary (BNF) for GPs’ mistakes); and asking other forum users for feedback on the advice received. GP advice was disregarded almost exclusively when related to dealing with statin side effects, after one or two GP consultations.The feedback received by forum users was largely appropriate. 1/3 of feedback was provided by 2 sensible ‘super-users’. Themes for feedback revolved around sharing own SPM experience, directing back to GPs with expectations of GP actions, or to external evidence. Statins provoked the most complex feedback.


Side effects of SPM, and statins in particular, cause anxiety and resentment in some patients, and their concerns are not always addressed by their GP. GPs could consider more proactive strategies to manage such side effects (e.g. offer follow up after medication changes; warn patients in advance about side effects, and about potential need of several attempts to find suitable treatment). Forum feedback was appropriate and mostly supportive of the advice received by the GP.

Submitted by: 
Anna De Simoni
Funding acknowledgement: 
This study was funded by a NIHR Academic Clinical Lectureship to Anna De Simoni.