Patient participation in end-stage kidney disease care: variation over time and effects of staff-directed interventions - a quasi-experimental study

BACKGROUND: Among those elements establishing decent quality of care from a patient perspective, opportunities to participate in accord with one’s individual needs and preferences are central. To date, little is known the extent of preference-based patient participation in kidney care, and what facilitates optimal conditions. This study investigated i) preference-based patient participation in kidney care over time, and ii) the effects of interventions designed to enhance person-centred patient participation. METHODS: A quasi-experimental study was conducted across nine kidney care sites in southeast Sweden. A cohort of 358 patients with stage IV chronic kidney disease (eGRF 15–19 ml/min) or V (eGRF < 15 mL/min) entered the study. Of these, 245 patients (with kidney replacement therapy or intermittent outpatient visits only) completed a survey on patient participation at four time points: every six months from August 2019 to May 2021, patients reported their preferences for and experiences of participation using the validated Patient Preferences for Patient Participation tool, the 4Ps. Between the first and second data collection points, interventions were provided for designated staff to facilitate person-centred participation, using two strategies for two subgroups at three sites each: the managers receiving a bundle of information via e-mail on patient participation in a standard dissemination procedure (three sites), or an additional half-year support program for implementation offered to 1–2 staff per site (three sites), with no intervention for a control group (three sites). The differences in 4Ps data between groups were analysed using multilevel ordinal regression. RESULTS: Over time and across all sites, most patients’ experiences of participation fully or almost fully matched their engagement preferences (57%–90%). Still, up to 12% of patient reports indicated that their preferences and experiences were insufficiently matched: in these cases, the patients had preferred to be more involved than they had experienced, for example, in making healthcare plans and setting health-related goals. The interventions did not affect the levels of preference-based participation, but patients in the control group sites had slightly more consistent matches. CONCLUSIONS: Living with kidney failure necessitates patient engagement, but opportunities to participate in accordance with one’s preferences are not fully provided for all patients. Additional efforts to support a common understanding and to ensure person-centred patient participation is still needed. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12882-023-03313-z.