title: 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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Nephrology, Central Manchester Hospitals NHS Trust, Manchester Royal Infirmary, Oxford Road, Manchester, M13 9WL, UK. anu_5577@yahoo.co.in.
authors.forename: Anuradha
authors.initials: A
authors.lastname: Jayanti
authors.affiliation: Department of Political and Economic Studies, University of Helsinki, Helsinki, Finland. markus.neuvonen@filosofianakatemia.fi.
authors.forename: Markus
authors.initials: M
authors.lastname: Neuvonen
authors.affiliation: Department of Psychology, University of Manchester, Manchester, UK. Alison.Wearden@manchester.ac.uk.
authors.forename: Alison
authors.initials: A
authors.lastname: Wearden
authors.affiliation: Department of Biostatistics, University of Manchester, Manchester, UK. Julie.Morris@manchester.ac.uk.
authors.forename: Julie
authors.initials: J
authors.lastname: Morris
authors.affiliation: Department of Biostatistics, University of Manchester, Manchester, UK. Philip.Foden@manchester.ac.uk.
authors.forename: Philip
authors.initials: P
authors.lastname: Foden
authors.affiliation: Department of Nephrology, Central Manchester Hospitals NHS Trust, Manchester Royal Infirmary, Oxford Road, Manchester, M13 9WL, UK. Paul.Brenchley@manchester.ac.uk.
authors.forename: Paul
authors.initials: P
authors.lastname: Brenchley
authors.affiliation: Department of Nephrology, Central Manchester Hospitals NHS Trust, Manchester Royal Infirmary, Oxford Road, Manchester, M13 9WL, UK. Sandip.Mitra@cmft.nhs.uk.
authors.forename: Sandip
authors.initials: S
authors.lastname: Mitra
mesh_terms: D003430:Cross-Sectional Studies; D003657:Decision Making; D005260:Female; D006801:Humans; D007676:Kidney Failure, Chronic / Q000523:psychology* / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D010358:Patient Participation; D057240:Patient Preference; D011446:Prospective Studies