Patient participation and informed consent : perceptions of Maltese patients with rheumatological conditions

Abstract

The process of informed consent and shared decision making respects patients' autonomy, protects them from coercion and deception, and promotes their well-being and satisfaction. However, patients should retain the prerogative to decide on the extent of the information they wish to be given and also the degree to which they wish to be involved in the decision making process. This study aimed at investigating this with respect to Maltese patients with inflammatory rheumatic diseases who were prescribed medications with potentially serious side effects. It also sought to establish whether they were satisfied with their level of participation. The majority of the participants reported a high desire for knowledge of side effects of the medications prescribed and two-fifths of the study group actively searched for more information about their disease or medications. The few patients who preferred not to be informed about side effects tended to be older and had a poorer level of education. The desire for knowledge about side effects did not seem to translate into a desire for participation in the decision making process, with more than half the study population content to leave the decision in the hands of the physician. Patients who prefered shared decision making tended to be younger, with a higher level of education, and female. A high degree of satisfaction with the decision making process was observed and indicators of how this could be further enhanced are discussed.