Diabetes patient’s pharmacovigilance knowledge and risk perception: the influence of being part of a patient organisation

OBJECTIVE: The aim was to assess the perception of risk for developing adverse drug reaction (ADRs) and knowledge, attitudes and opinions regarding pharmacovigilance in diabetic patients, and to investigate the effect of being a member of a patient organisation for diabetes on these factors, in comparison with other patients. METHODS: A cross-sectional study looking for patients’ risk perception of experiencing ADRs. Diabetes patients followed at the Portuguese Diabetes Association (APDP) were included, together with two comparison groups (patients with and without diabetes). Kruskal-Wallis followed by post hoc Dunn’s multiple-comparison test were used to compare patients’ groups. RESULTS: A total of 314 patients participated in the survey (104 followed at APDP, 106 with diabetes not followed at APDP and 104 without diabetes diagnosis that used chronic medication). APDP patients presented higher risk perception scores for medicines related to their disease compared with two groups. Those patients affirmed that doctors explained possible ADRs on medication to them, and showed higher intention to report ADRs in the future if serious or unexpected. CONCLUSIONS: Patients with diabetes showed greater understanding of ADRs and higher need to report them than patients without diabetes. They would like to have more information about general ADRs related to anti-diabetic medication and present higher intention to acquire information on how and when to report compared with non-diabetic patients. Patients followed in APDP presented higher score of risk perception, which could be influenced by the presence of the diabetes disease in the patients’ life, by their previous experiences using medicines, but also by information received from the patient organisation. The two groups of patients with diabetes have different experiences of the disease, but both present higher perception of side effects related with medicines they use respectively in their diabetes type. Hence, patient organisations are well positioned to be a source where patients can obtain reliable information, changing their attitudes and perceptions about the disease and drug treatments.