Welcome to this summary of work by the Yorkshire Dialysis Decision Aid (YoDDA) team's work carried out to understand people’s dialysis decisions, develop a dialysis decision aid, and assess the acceptability of dialysis decision aids to patients and kidney health professionals.
Below is information about our activities. The next page describes briefly the YoDDA-booklet and YoDDA-web studies with patients and predialysis teams making dialysis decisions (2012-2014). Click on the decision aid tab to go to YoDDA-web.
- 2014: In partnership with the YoDDA team, Kidney Research UK launch The Dialysis Decision Aid Booklet [https://www.kidneyresearchuk.org/DialysisDecisionAid] for use by kidney services, people with chronic kidney disease, and friends and family of people making dialysis decisions in the UK, and Internationally.
- 2013: The Yorkshire Kidney Research Fund and Kidney Research UK funded Dr Anna Winterbottom to assess the acceptability of YoDDA-web to patients and kidney services across the UK (2013-2014). More details here.
- 2010: A Kidney Research UK grant funded Drs Anna Winterbottom, Teresa Gavuruzzi and Leila Mehdizadeh to undertake the development of the YoDDA booklet and assessment of YoDDA’s acceptability to patients making dialysis decisions with predialysis staff in Yorkshire (2012-2013). More details here.
- 2010: An Informed Decision Making Foundation grant (USA) funded Dr Teresa Gavaruzzi to undertake on-line, experimental studies of the following active ingredients on hypothetical dialysis decisions: presenting information in linear or parallel; grouping options by treatment or location; decision aid with or without patient stories or value elicitation questions. More details here.
- 2008: Workshops, lectures and scientific presentations to kidney patients and professionals about ways of helping patients make more informed dialysis decisions. More details here.
- 2004: ESRC CASE studentship, with Baxter Healthcare Ltd, Anna Winterbottom’s work on: leaflet effectiveness in supporting patients’ dialysis decisions; patients’ choices about dialysis; patient stories impact on informed decision making. More details here.
- Bekker HL on behalf of the Yorkshire Dialysis Decision Aid (YoDDA) research team. Patients evaluation of the Yorkshire Dialysis Decision Aid (YoDDA) delivered on-line: a randomised control trial. ABSTRACT. European Society of Medical Decision Making Conference. 2014.
- Bekker HL, Winterbottom AE, Wilkie M, Brown E, Davies S, Mooney A. Patients use of the internet-based Yorkshire Dialysis Decision Aid: A Randomised Controlled Trial. (submission 2015).
- Bekker HL, Winterbottom A, Gavaruzzi T, Mooney A, Wilkie M, Davies S, Crane D, Tupling K, Mathers N of the Yorkshire Dialysis Decision Aid (YoDDA) Research Projects. The Dialysis Decision Aid Booklet: Making The Right Choices for You. Kidney Research UK: Peterborough, UK. (2014). http://www.kidneyresearchuk.org/health-information.
- Winterbottom AE, Gavaruzzi T, Mooney A, Wilkie M, Davies SJ, Crane D, Baxter PD, Meads DM, Mathers N, Bekker HL. Supporting Informed Patient Choice: The Yorkshire Dialysis Decision Aid Trial (Peritoneal Dialysis International. 2014 submitted).
- Abhyankar P, Summers BA, Velikova G, Bekker HL. Framing Options as Choice or Opportunity: Does the Frame Influence Decisions? Med Decis Making 2014; 34: 567–582.
- Bekker HL. The loss of reason in patient decision aid research: do checklists affect the validity of informed choice interventions? Patient Education and Counseling 2010; 78:357-364.
- Gavaruzzi T, Summers B, Latchford G, Mooney A, Stiggelbout A, Wilkie M, Winterbottom A, Bekker HL. Evaluating the impact of value clarification exercises on decisions about dialysis options. ABSTRACT. Society of Judgment and Decision Making Conference. 2011.
- Gavaruzzi T, Summers B, Latchford G, Mooney A, Stiggelbout A, Wilkie M, Winterbottom A, Bekker HL. Evaluating the impact of patient narratives on decisions about dialysis options. ABSTRACT. Society of Judgment and Decision Making Conference. 2011
- Gavaruzzi T, Summers B, Latchford G, Mooney A, Stiggelbout A, Wilkie M, Winterbottom A, Bekker HL. Evaluating the impact of structuring information on decisions about dialysis options. ABSTRACT. Society of Judgment and Decision Making Conference. 2011.
- Bekker HL on behalf of the Yorkshire Dialysis Decision Aid (YoDDA) research team. Testing the added value of decision aid components to facilitate patients informed decision making about dialysis treatment options. ABSTRACT. Society of Medical Decision Making Conference. 2012.
- Bekker HL, Winterbottom AE, Butow P, Dillard A, Feldman-Stewart D, Fowler J, Jibaja-Weiss M, Shaffer V, Volk RJ. Do personal stories make patient decision aids more effective: a critical review of evidence and theory? BMC Medical Informatics and Decision Making. 2013: 13 (Suppl2):S9 (doi:10.1186/1472-6947-13-S2-S9).
- Bekker HL, Hewison J, Thornton JG. Understanding why decision aids work: linking process and outcome. Patient Education and Counselling. 2003; 50: 323-329.
- From 2012: Kidney professionals scientific conferences including: the British Renal Society, European Peritoneal Dialysis Conference, American Society of Nephrology.
- From 2012: NHS kidney care research-in-practice seminars.
- From 2011: National Kidney Federation Annual Conference, and regional kidney patient organisations.
- From 2011: The Annual Meeting of The Kidney Education Network.
- From 2011: Kidney units’ research-in-practice meetings (UK), from 2014 outside the UK.
- From 2009: European Dialysis and Transplant Nurses Association / European Renal Care Association (EDTNA / ERCA) annual conference.
- From 2008: Peritoneal Dialysis Education Seminars delivered by Baxter Healthcare Ltd.
- Bekker HL, Winterbottom A, Mooney A. Patient information and decision making processes (editorial). British Journal of Renal Medicine. 2009; 14: 28-30.
- Mooney A, Winterbottom A, Bekker HL. The importance of expert education in enabling informed, activated patients (letter). Kidney International. 2009; 75; 1116-1117.
- Winterbottom A, Bekker HL, Conner Mark, Mooney A, Evaluating the quality of patient information provided by Renal Units across the UK. Nephrology, Dialysis and Transplantation. 2007; 22: 2291-2296.
- Winterbottom AE, Bekker HL, Conner M, Mooney A. Choosing Dialysis Modality: decision making in a chronic disease context. Health Expectations. 2012. DOI: 10.1111/j.1369-7625.2012.00798.x
- Winterbottom AE, Bekker HL, Conner M, Mooney A. Patient stories about their dialysis experience biases others’ choices regardless of doctor’s advice: an experimental study. Nephrol Dial Transplant. 2012; 27: 325-331.
- Winterbottom A, Bekker HL, Conner M, Mooney A. Does narrative information bias individual’s decision making? A systematic review. Social Science and Medicine. 2008; 67: 2079-2088.
For further information about the decision aids and/or research contact:
Dr Hilary Bekker
(PhD, C.Psychol, AF BPS),
Leeds Institute of Health Sciences,
School of Medicine, University of Leeds, UK