Can we routinely measure patient involvement in treatment decision making in chronic kidney care? A service evaluation in 27 renal units in the UK.

Background: Shared decision making is considered an important aspect of chronic disease management. We explored the feasibility of routinely measuring kidney patients’ involvement in making decisions about renal replacement therapy (RRT) in NHS settings. Methods: We disseminated a 17-item paper questionnaire on involvement in decision making among adult patients with established kidney failure who: made a decision about RRT in the last 90 days (phase 1); had been receiving RRT for 90-180 days (phase 2). Recruitment rates were calculated as the ratio between the number of included and expected eligible patients (I:E ratio). We assessed our sample's representativeness by comparing demographics between participants and incident patients in the UK Renal Registry. Results: 305 (phase 1) and 187 (phase 2) patients were included. For phase 1, the I:E ratio was 0.44 (range, 0.08-2.80), compared to 0.27 (range, 0.04-1.05) in phase 2. Study participants were more likely to be white compared to incident RRT patients (88% versus 77%; P<0.0001). We found no difference in age, gender, or social deprivation. In phase 1 and 2, the majority reported a collaborative decision-making style (73% and 69%), and had no decisional conflict (85% and 76%); the median score for shared decision-making experience was 12.5 (phase 1) and 10 (phase 2) out of 20. Conclusion: Our study shows the importance of assessing the feasibility of data collection in a chronic disease context prior to implementation in routine practice. Routine measurement of patient involvement in established kidney disease treatment decisions is feasible, but there are challenges in selecting the measure needed to capture experience of involvement, reducing variation in response rate by service, and identifying when to capture experience in a service managing people’s chronic disease over time.