Patients’ use of information sources regarding side effects

Background: Medicine side effects are common, but little is known about the different information sources patients use in identifying suspected side effects and how these are perceived. Aim: To determine the perceived value and use of different information sources to support side effect identification. Method: NHS Ethics approval was granted. A questionnaire was developed and piloted which covered likely use of information sources, plus views on their ease of access, trustworthiness and ease of understanding; experiences of side effects and actual use of information sources in relation to these; and respondent confidence in the association. The questionnaire was distributed to adult customers of pharmacies in Kent and Birmingham, using prescription or non-prescribed medicines in the past six months. Chi-squared tests were used to assess associations and missing data excluded from analysis. Results: A total of 894 questionnaires were distributed and 230 returned (25.7% response rate). Over half the respondents were female (141; 61.3%), 73 (32.0%) were aged below 50, 99 (43.4%) 51 to 70 and 56 (24.6%) above 70 years. Most (193; 84.6%) used at least one medicine regularly and 160 (69.6%) indicated they had experienced at least one side effect from a medicine. Information sources respondents indicated most frequently they would use to find out about a side effect were patient information leaflets (PILs) (194; 85.1%), GPs (192; 84.2%), pharmacists (153; 67.1%), the internet (123; 55.3%) and relatives/friends (73; 32.0%). While most respondents (180; 78.3%) thought PILs easy to access, fewer considered them trustworthy (135; 59.0%) and 124 (54.1%) easy to understand. In contrast, most people (181; 79.0%) considered GPs trustworthy information sources, but fewer thought them easy to access (95; 41.5%). Pharmacists were judged both easy to access (175; 76.4%) and trustworthy (166; 72.5%). The internet was viewed as easy to access, particularly by younger respondents, but only 34 (14.8%) viewed it as trustworthy. Two-thirds considered both pharmacists and GPs easy to understand, in contrast to hospital doctors (60; 26.2%). Among those experiencing a side effect, 100 (63.3%) were very confident the effect was due to their medicine and 44 (27.8%) fairly confident; 31 (19.5%) had used only one source to confirm their view, 50 (31.4%) two sources, 53 (33.3%) three sources and 25 (15.7%) more than three. The actual sources used by these respondents differed slightly from their views on the likelihood of using, with GPs being used most frequently (68.6%), followed by PILs (66.7%) the internet (37.7%), pharmacists (27.7%) then relatives/friends (18.2%). Of the 31 using one information source, 19 accessed a healthcare professional, eight used the PIL and four the internet. All but six of those using two or more sources accessed a health professional. Confidence in the association was not associated with the number of sources used or with use of a healthcare professional, but was slightly higher among those using the internet (p<0.05). Conclusion: Most patients experiencing suspected side effects consult a health professional, particularly GPs. PILs and the internet were used more frequently than pharmacists, despite being judged less trustworthy than pharmacists.