title: Can we routinely measure patient involvement in treatment decision-making in chronic kidney care? A service evaluation in 27 renal units in the UK.
abstract: 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 National Health Service 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 previous 90 days (Phase 1) and patients who 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
  Three hundred and five (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 with 0.27 (range, 0.04-1.05) in Phase 2. Study participants were more likely to be white compared with incident RRT patients (88 versus 77%; P < 0.0001). We found no difference in age, gender or social deprivation. In Phases 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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: The Dartmouth Institute for Health Policy and Clinical Practice, Dartmouth College, Hanover, NH, USA; Department of Psychology, University of Hertfordshire, Hatfield, UK.
authors.forename: Marie-Anne
authors.initials: MA
authors.lastname: Durand
authors.affiliation: Leeds Institute of Health Sciences , University of Leeds , Leeds , UK.
authors.forename: Hilary L
authors.initials: HL
authors.lastname: Bekker
authors.affiliation: UK Renal Registry , Bristol , UK.
authors.forename: Anna
authors.initials: A
authors.lastname: Casula
authors.affiliation: King's College Hospital , Denmark Hill, London , UK.
authors.forename: Robert
authors.initials: R
authors.lastname: Elias
authors.affiliation: Nottingham University Hospitals NHS Trust , Nottingham , UK.
authors.forename: Alastair
authors.initials: A
authors.lastname: Ferraro
authors.affiliation: Cochrane Institute of Primary Care and Public Health , Cardiff University , Cardiff , UK.
authors.forename: Amy
authors.initials: A
authors.lastname: Lloyd
authors.affiliation: European Renal Best Practice (ERBP) Methods Support Team , University Hospital Ghent , Ghent , Belgium.
authors.forename: Sabine N
authors.initials: SN
authors.lastname: van der Veer
authors.affiliation: Scottish Renal Registry, Meridian Court , Glasgow , UK.
authors.forename: Wendy
authors.initials: W
authors.lastname: Metcalfe
authors.affiliation: St James University Hospital , Leeds , UK.
authors.forename: Andrew
authors.initials: A
authors.lastname: Mooney
authors.affiliation: Institute of Health and Society , Newcastle University , Newcastle upon Tyne , UK.
authors.forename: Richard G
authors.initials: RG
authors.lastname: Thomson
authors.affiliation: Department of Renal Medicine , Freeman Hospital , Newcastle upon Tyne , UK.
authors.forename: Charles R V
authors.initials: CR
authors.lastname: Tomson
keywords: chronic kidney disease; doctor–patient communication; implementation; routine measure; shared decision-making