CM MCKERCHER1, AJ VENN1, AL NEIL1, KA SANDERSON1,2, MD JOSE1,3,4
1Menzies Institute for Medical Research, University of Tasmania, Hobart, Tasmania; 2School of Health Sciences, University of East Anglia, Norwich, UK; 3School of Medicine, University of Tasmania, Hobart, Tasmania; 4Royal Hobart Hospital, Hobart, Tasmania
Aim: To examine preferences and factors associated with autonomous decision-making in adults with chronic kidney disease (CKD) prior to renal replacement therapy.
Background: Patients diagnosed with CKD are faced with incrementally complex decision-making through their treatment journey. The extent to which patients seek active involvement in the decision-making process has implications for quality of life and long-term health outcomes.
Methods: 122 adults (40 women, 33%) aged ≥18 years (71.5±11.3 years) with CKD (eGFR <30 mls/min/1.73m2) and not receiving dialysis were recruited via treating physicians. Patient preferences for information-seeking and decision-making were self-reported using the Autonomy Preference Index (API). Cross-sectional associations between demographic, psychosocial, and clinical factors with the information-seeking and decision-making scales of the API were examined using linear regression models adjusted for age, gender and occupational attainment where appropriate.
Results: Participants indicated a strong preference to be well-informed (Information-seeking scale, mean 0.81±0.11), but were more neutral in their preference to actively participate in decision-making (Decision-making scale, mean 0.43±0.17). Multivariate regression models indicated that an increased desire for information was associated with higher occupational attainment, higher executive functioning (Montreal Cognitive Assessment), higher self-reported symptoms/problems (Kidney Disease Quality of Life Short Form) and poorer self-reported physical health (SF-36 Physical Component Summary) (all p<0.05). An increased desire for involvement in decision-making was associated with younger age (p<0.01) and female gender (p<0.05) only.
Conclusions: While adults with CKD indicate a preference to receive medical information, this may not always imply a desire to be actively involved in the decision-making process. By taking into consideration factors that may affect patient preferences for autonomous decision-making, such as age and gender, health professionals may more successfully engage individual patients in decision-making.