Patient participation – to what extent? A survey of patients’ perspectives

Abstract

Objective: The past decades have seen an increasingly patient-centred approach to healthcare delivery, with emphasis on patients’ participatory role. Patients understand the participatory role as being provided with relevant information, opportunity to give their opinion on potential treatments, involvement in discussions about their condition, or involvement in the decision-making process. Patients’ wishes for participation vary considerably. The aim of this study is to explore patients’ assessment of the importance of, preferences for and experience of participation.

Methods: A cross-sectional cohort study was conducted. Inpatients and outpatients with diabetes, heart failure or haematological cancer admitted to a hospital in Denmark (N = 1736) received a questionnaire. The results are described by proportions and analysed by Pearson’s chi-square test.

Results: The questionnaire was returned by 1173 patients (68% response rate) of whom 89% found participation very important. The same proportion perceived adequacy of information, 90% expressed a preference for consultation in decision-making and 51% wanted to leave the decisions to staff. Seventy-two percent experienced participation. However, 54% of the respondents who received adequate information and 51% of those who wanted to be consulted did not prefer to make decisions themselves. Sixty percent of the respondents reported a mismatch, as they did not want participation but had nevertheless been involved by staff.

Conclusions: Patients find participation of great importance, they feel adequately informed and prefer being consulted in decision-making while they do not necessarily want to make the decisions themselves. We found considerable variation in patients’ level of preferred participation and a mismatch between levels of preferred and received participation.