Healthcare decision-making in end stage renal disease-patient preferences and clinical correlates

Abstract

Background: Medical decision-making is critical to patient survival and well-being. Patients with end stage renal disease (ESRD) are faced with incrementally complex decision-making throughout their treatment journey. The extent to which patients seek involvement in the decision-making process and factors which influence these in ESRD need to be understood.

Methods: 535 ESRD patients were enrolled into the cross-sectional study arm and 30 patients who started dialysis were prospectively evaluated. Patients were enrolled into 3 groups- 'predialysis' (group A), 'in-centre' haemodialysis (HD) (group B) and self-care HD (93 % at home-group C) from across five tertiary UK renal centres. The Autonomy Preference Index (API) has been employed to study patient preferences for information-seeking (IS) and decision-making (DM). Demographic, psychosocial and neuropsychometric assessments are considered for analyses.

Results: 458 complete responses were available. API items have high internal consistency in the study population (Cronbach's alpha > 0.70). Overall and across individual study groups, the scores for information-seeking and decision-making are significantly different indicating that although patients had a strong preference to be well informed, they were more neutral in their preference to participate in DM (p < 0.05). In the age, education and study group adjusted multiple linear regression analysis, lower age, female gender, marital status; higher API IS scores and white ethnicity background were significant predictors of preference for decision-making. DM scores were subdivided into tertiles to identify variables associated with high (DM > 70: and low DM (≤30) scores. This shows association of higher DM scores with lower age, lower comorbidity index score, higher executive brain function, belonging in the self-caring cohort and being unemployed. In the prospectively studied cohort of predialysis patients, there was no change in decision-making preference scores after commencement of dialysis.

Conclusion: ESRD patients prefer to receive information, but this does not always imply active involvement in decision-making. By understanding modifiable and non-modifiable factors which affect patient preferences for involvement in healthcare decision-making, health professionals may acknowledge the need to accommodate individual patient preferences to the extent determined by the individual patient factors.

Fig. 1

Diagram depicting API data available for analysis (N)

Fig. 2

Box Plots showing the median scores on the API for Information-seeking and Decision-making subscales in all three study groups

Fig. 3

Responses to the three clinical vignettes from the API tool by the ESRD group. Actual scores are presented on the x-axis and frequency distribution of the scores is presented along the y-axis. The responses patients could choose from are provided in the API tool in the Additional file 3: supplementary material. Vignette 1: Patient preference for management of a simple upper respiratory tract infection (URTI). Median score 6 (Interquartile range 4, 8). Vignette 2: Patient preference for management of high blood pressure (BP). Median score 9 (Interquartile range 7, 11). Vignette 3: Patient preference for management of a heart attack or acute coronary syndrome (ACS). Median Score 10 (Interquartile range 8, 12)

Fig 4

Distribution of patient clusters determined by high and low decision-making scores