'Beyond the desired effect': Patients' experiences in identifying and managing side effects from medicines

Side effects from medicines can have considerable negative impact on peoples' daily lives. As a result of an aging UK population and attendant multi-morbidity, an increasing number of medicines are being prescribed for patients, leading to increased risk of unintended side effects. The aim of this study was to explore experiences and opinions of patients and the public in identifying and managing side effects from medicines. It also sought to develop a novel causality scale for use by patients to assess suspected side effects.

A mixed methods approach with four phases was selected. In Phase One surveys were distributed in pharmacies to gather information on patients' experiences of side effects and recruit potential interviewees for the following phase (935 surveys distributed; 230 returned). In-depth interviews were conducted in Phase Two with 15 people who had experienced side effects. These explored their opinions and experiences and informed Phase Three. This phase developed and validated a side effects assessment tool for patients' use (SE-PAST). The validation consisted of two strands, initial validation (by 31 assessors) followed by online validation (273 completed responses). In Phase Four 2285 patient reports to the Yellow Card Scheme were examined to learn about experiences of side effects, to investigate the value of patient reports to pharmacovigilance and to compare experiences of Yellow Card reporters to the public.

This study provided novel insights into the strategies employed by patients to identify and manage their side effects. Patients seeking side effect information used a variety of information sources and the findings suggest that a key aspect of source selection may be a hierarchy of source characteristics. The strategies used to manage side effects varied, including both cognitive and behavioural responses such as non-adherence and consultation with healthcare professionals. The findings suggest that these strategies were influenced by a range of factors including established health beliefs; previous experience of side effects and cognitive biases. Areas of similarity and difference were identified between Yellow Card reporters and the general public. There was evidence of patterns in the causative drugs, the type and impacts of effects between those who report side effects and the wider public; however there was a difference in coping strategies between these groups, with non-adherence being more prevalent among Yellow Card reporters. Most on-line users of the SE-PAST agreed it would encourage them to report their side effect or talk to a healthcare professional about it.

The thesis provides a unique and insightful perspective on patients' personal experiences of side effects, with implications for policy and practice. It has established that side effects can have noteworthy impacts with prolonged consequences on many aspects of patients' lives.