Preference-based patient participation for most, if not all: A cross-sectional study of patient participation amongst persons with end-stage kidney disease.

BACKGROUND Patient participation is considered central for good healthcare. Yet, the concept is not fully understood when it comes to patients' experiences of participation in conjunction with their preferences, particularly in long-term healthcare. The aim of this study was to investigate the extent and variation of preference-based patient participation in patients with end-stage kidney disease (ESKD). METHODS A cross-sectional study was conducted with 346 patients in renal care. The main variables were patients' preferences for and experiences of patient participation, determined using the Patient Preferences for Patient Participation tool, the 4Ps. Analyses identified the degree of match between preferences and experiences, that is, the preference-based patient participation measure. RESULTS Overall, 57%-84% of the patients reached a sufficient level of preference-based patient participation on the items, while 2%-12% reached an insufficient level. A mismatch indicated either less or more participation than preferred; for example, 40% had less experience than preferred for taking part in planning, and 40% had more than preferred for managing treatment. CONCLUSION This study shows that, although many patients reach a sufficient level of preference-based patient participation, this is not the case for all patients and/or attributes. Further opportunities for a mutual understanding of patients' preferences are needed for healthcare professionals to support person-centred patient participation. PATIENT OR PUBLIC CONTRIBUTION The 4Ps is manufactured in collaboration with people with experience of the patient role, and persons living with ESKD were engaged in identifying their preferences and experiences of participation in renal care.