Patient decision making about dialysis in End Stage Renal Failure


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Patient decision making about dialysis in End Stage Renal Failure

  1. 1. Patient decision making about dialysis in End Stage Renal Failure Anna Winterbottom* Hilary L Bekker** Mark Conner* Andrew Mooney*** *Institute of Psychological Sciences, University of Leeds **Institute of Health Sciences and Public Health Research, University of Leeds ***Adult Renal Services, St James University Hospital, Leeds
  2. 2. Presentation overview <ul><li>Background to research area </li></ul><ul><li>Audit and quality assessment of information </li></ul><ul><li>Qualitative interview study </li></ul><ul><li>Future directions </li></ul>
  3. 3. Background <ul><li>‘ To optimise the role that people with CKD can take in the management of their care’ </li></ul><ul><li>(NSF for Renal Services, 2004) </li></ul><ul><li>Patient involvement in decision making is a service priority </li></ul><ul><li>(The NHS Plan, 2000) </li></ul>
  4. 4. Informed decision making <ul><li>Requires accurate, comprehensive and unbiased information to be provided by the healthcare provider </li></ul><ul><li>The patient must assimilate this information in agreement with their own beliefs and values </li></ul><ul><li>(Bekker et al, 2004; Charles et al 1999 </li></ul><ul><li>Marteau et al, 2001; O’Connor et al, 1999) </li></ul>
  5. 5. Informed decision making <ul><li>More informed choices: </li></ul><ul><ul><li>Less regret about decisions </li></ul></ul><ul><ul><li>More realistic appraisals of risks and benefits of treatment options </li></ul></ul><ul><ul><li>Lower anxiety in the long term </li></ul></ul><ul><ul><li>Less false reassurance </li></ul></ul><ul><ul><li>Greater adherence to treatment regimens </li></ul></ul><ul><ul><li>Greater satisfaction with services. </li></ul></ul><ul><ul><li>(Bekker, 2003; Fallowfield et al, 1990) </li></ul></ul>
  6. 6. The renal context <ul><li>How do patients with end stage renal failure make treatment decisions? </li></ul><ul><li>Do patients make an informed choice? </li></ul><ul><li>Can patients be supported to make informed treatment decisions? </li></ul>
  7. 7. Overview of studies <ul><li>Audit and quality assessment of patient information </li></ul><ul><li>Qualitative study examining patients’ experience of dialysis decision making </li></ul><ul><li>The role of patients’ experience in the decision making process </li></ul>
  8. 8. Audit and quality assessment of patient information <ul><li>To describe the prevalence and source of information provided about dialysis by renal services across the UK </li></ul><ul><li>To evaluate the quality of written information about dialysis provided by renal services across the UK </li></ul>
  9. 9. Methods - audit <ul><li>67/100 (67%) renal units returned questionnaires </li></ul><ul><li>55% (n=34/62) hub units </li></ul><ul><li>29% (n=11/38) satellite units </li></ul><ul><li>33% (n=22/67) of the questionnaires did not include an identifier </li></ul><ul><li>Services provide a considerable amount information in a variety of formats </li></ul>
  10. 10. Findings – audit of information Table 1: Percentage of renal units providing written, video taped and verbal information 76 99 37 79 Lifestyle changes 90 99 83 98 CAPD 90 100 78 97 Treatment options 84 94 10 73 Conservative treatment 85 100 40 95 General information on ESRF 93 99 79 100 Haemodialysis 96 97 53 93 Renal transplant Verbal information from doctor (%) Verbal information from nurse (%) Video taped information (%) Written information (%) Topic of information
  11. 11. Methods – quality assessment <ul><li>31/47 renal units (66%) provided leaflets </li></ul><ul><li>3 renal charities </li></ul><ul><li>Each unit provided about three different leaflets </li></ul><ul><li>31 leaflets were included in the analysis. </li></ul><ul><li>18 (57%) general information about treatment options, </li></ul><ul><li>4 (13%) described haemodialysis, </li></ul><ul><li>4 (13%) peritoneal dialysis, </li></ul><ul><li>3 (10%) renal transplants, </li></ul><ul><li>2 (7%) conservative care only </li></ul>
  12. 12. Coding frame <ul><li>ESRF pathology; </li></ul><ul><li>haemodialysis (HD); </li></ul><ul><li>continuous cycling peritoneal dialysis (CCPD); </li></ul><ul><li>continuous ambulatory peritoneal dialysis (CAPD); </li></ul><ul><li>conservative care; </li></ul><ul><li>kidney transplant; </li></ul><ul><li>information known to assist decision making e.g. risk presentation, framing and value judgments, talking to others </li></ul><ul><li>format of information </li></ul><ul><li>Average score: 39 out of 135 </li></ul>
  13. 13. Haemodialysis leaflets <ul><li>4 HD leaflets </li></ul><ul><li>mean quality score = 12 out of 20, </li></ul><ul><li>2 provided information about kidney transplants; none referred to any other treatment options, </li></ul><ul><li>Half (n=2) recommended haemodialysis, </li></ul><ul><li>None included any risk information , </li></ul><ul><li>Harms and benefits of treatment options were provided in a balanced way (n=3), </li></ul><ul><li>no techniques were used to help patients elicit their personal views e.g. a diagram of treatment options and consequences. </li></ul>
  14. 14. Findings – quality assessment <ul><li>There is no consistency in sources of patient information across service providers – 31 leaflets available </li></ul><ul><li>Leaflets difficult to understand – readability score equivalent to the Financial Times </li></ul><ul><li>Purpose of leaflets is unclear – seem to provide information but not facilitate decision making </li></ul>
  15. 15. Patient decision making in end stage renal failure – a qualitative study <ul><li>20 patients recruited from the low clearance clinic </li></ul><ul><li>13 male; mean age 55 (range 28-84 yrs) </li></ul><ul><li>4 groups: </li></ul><ul><li>- 3 new patients, </li></ul><ul><li>- 5 patients who had attended an educational workshop, </li></ul><ul><li>- 10 patients who had made their decision, </li></ul><ul><li>- 2 patients interviewed at all 3 time points. </li></ul>
  16. 16. Research questions <ul><li>Are patients making an informed choice? </li></ul><ul><li>What are the factors that influence decision making? </li></ul><ul><li>How do patients make decisions over time? </li></ul>
  17. 17. Findings <ul><li>The experience of meeting others on dialysis </li></ul><ul><li>‘ being taken through each stage and then actually talking to people that had the treatment you were having, I think it was absolutely marvellous’ </li></ul><ul><li>‘ he said carry on doing what you are doing but he said once you go onto dialysis you have to lead a fairly strict diet regime’ </li></ul><ul><li>(male, 76 yrs, cause unclear, undecided) </li></ul>
  18. 18. Future directions <ul><li>Meeting other patients on dialysis and decision making </li></ul><ul><li>Are stories biasing the decision making process? </li></ul><ul><li>Systematic review of the literature </li></ul><ul><li>Are stories reinforcing patients decisions? </li></ul><ul><li>Future studies </li></ul>
  19. 19. References <ul><li>Bekker, H. L., Hewison, J., & Thonrton, J.G. (2003) Understanding why decision aids work: linking process with outcome Patient Education & Counseling 50(3): 323-9. </li></ul><ul><li>Bekker, H. L., Hewison, J., & Thonrton, J.G. (2004) Applying decision analysis to facilitate informed decision making about prenatal diagnosis for Down syndrome: a randomised controlled trial. Prenatal Diagnosis 24(4): 265-75. </li></ul><ul><li>Department of Health (2000) The NHS plan: A plan for investment, A plan for reform. London HMSO </li></ul><ul><li>Department of Health (2004) The National Services Framework for Renal Services: Part One Dialysis and transplantation Department of Health. </li></ul><ul><li>Fallowfield, L.J., Hall, A., Maguire, P. & Baum, M. (1990) Psychological outcomes of different treatment policies in women with early breast cancer outside a clinical trial British Medical Journal 301: 575-580 </li></ul><ul><li>Marteau, T.M., Dormandy, E. & Michie S. (2001) A measure of informed choice Health Expectations 4: 99-108 </li></ul><ul><li>O’Connor, A.M., Rostom, A., Fiset, V., Tetroe, J., Entwistle, V., Llewellyn-Thomas, H., Holmes-Rovner, M., Barry, M. & Jones, J. (1999a) Decision aids for patients facing treatment or screening decisions: systematic review British Medical Journal 319: 731-4 ; </li></ul>
  20. 20. Other references of interest <ul><li>Database of Individual Patient Experiences: </li></ul><ul><li>Flesch R (1948) A new readability yardstick. Journal of Applied Psychology; 32: 221-233 </li></ul><ul><li>Ley P. & Florio T. (1996) The use of a readability yardstick Psychol Health Med ; 17-27 </li></ul><ul><li>Ubel PA. Jepson C. Baron J. (2001)The inclusion of patient testimonials in decision aids: effects on treatment choices. [Case Reports. Journal Article] Medical Decision Making. 21(1):60-8 </li></ul>