Patient decision making about dialysis in End Stage Renal Failure

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
Presentation overview

• Background to research area
• Audit and quality assessment of information
• Qualitative interview study
• Future directions

3
Background

• To optimise the role that people with CKD can
  take in the management of their care
• (NSF for Renal Services, 2004)
• Patient involvement in decision making is a
  service priority
• (The NHS Plan, 2000)

4
Informed decision making

• Requires accurate, comprehensive and unbiased
  information to be provided by the healthcare
  provider
• The patient must assimilate this information in
  agreement with their own beliefs and values
• (Bekker et al, 2004 Charles et al 1999
• Marteau et al, 2001 OConnor et al, 1999)

5
Informed decision making

• More informed choices
• Less regret about decisions
• More realistic appraisals of risks and benefits
  of treatment options
• Lower anxiety in the long term
• Less false reassurance
• Greater adherence to treatment regimens
• Greater satisfaction with services.
• (Bekker, 2003 Fallowfield et al, 1990)

6
The renal context

• How do patients with end stage renal failure make
  treatment decisions?
• Do patients make an informed choice?
• Can patients be supported to make informed
  treatment decisions?

7
Overview of studies

• Audit and quality assessment of patient
  information
• Qualitative study examining patients experience
  of dialysis decision making
• The role of patients experience in the decision
  making process

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Audit and quality assessment of patient
information

• To describe the prevalence and source of
  information provided about dialysis by renal
  services across the UK
• To evaluate the quality of written information
  about dialysis provided by renal services across
  the UK

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Methods - audit

• 67/100 (67) renal units returned questionnaires
• 55 (n34/62) hub units
• 29 (n11/38) satellite units
• 33 (n22/67) of the questionnaires did not
  include an identifier
• Services provide a considerable amount
  information in a variety of formats

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Findings audit of information
Verbal information from doctor ()
Verbal information from nurse ()
Video taped information ()
Written information ()
Topic of information
96
97
53
93
Renal transplant
93
99
79
100
Haemodialysis
90
99
83
98
CAPD
90
100
78
97
Treatment options
84
94
10
73
Conservative treatment
76
99
37
79
Lifestyle changes
85
100
40
95
General information on ESRF
Table 1 Percentage of renal units providing
written, video taped and verbal information
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Methods quality assessment

• 31/47 renal units (66) provided leaflets
• 3 renal charities
• Each unit provided about three different leaflets
• 31 leaflets were included in the analysis.
• 18 (57) general information about treatment
  options,
• 4 (13) described haemodialysis,
• 4 (13) peritoneal dialysis,
• 3 (10) renal transplants,
• 2 (7) conservative care only

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Coding frame

• ESRF pathology
• haemodialysis (HD)
• continuous cycling peritoneal dialysis (CCPD)
• continuous ambulatory peritoneal dialysis (CAPD)
  
• conservative care
• kidney transplant
• information known to assist decision making e.g.
  risk presentation, framing and value judgments,
  talking to others
• format of information
• Average score 39 out of 135

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Haemodialysis leaflets

• 4 HD leaflets
• mean quality score 12 out of 20,
• 2 provided information about kidney transplants
  none referred to any other treatment options,
• Half (n2) recommended haemodialysis,
• None included any risk information ,
• Harms and benefits of treatment options were
  provided in a balanced way (n3),
• no techniques were used to help patients elicit
  their personal views e.g. a diagram of treatment
  options and consequences.

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Findings quality assessment

• There is no consistency in sources of patient
  information across service providers 31
  leaflets available
• Leaflets difficult to understand readability
  score equivalent to the Financial Times
• Purpose of leaflets is unclear seem to provide
  information but not facilitate decision making

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Patient decision making in end stage renal
failure a qualitative study

• 20 patients recruited from the low clearance
  clinic
• 13 male mean age 55 (range 28-84 yrs)
• 4 groups
• - 3 new patients,
• - 5 patients who had attended an educational
  workshop,
• - 10 patients who had made their decision,
• - 2 patients interviewed at all 3 time points.

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Research questions

• Are patients making an informed choice?
• What are the factors that influence decision
  making?
• How do patients make decisions over time?

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Findings

• The experience of meeting others on dialysis
• being taken through each stage and then actually
  talking to people that had the treatment you were
  having, I think it was absolutely marvellous
• 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
• (male, 76 yrs, cause unclear, undecided)

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Future directions

• Meeting other patients on dialysis and decision
  making
• Are stories biasing the decision making process?
• Systematic review of the literature
• Are stories reinforcing patients decisions?
• Future studies

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References

• 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.
• 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.
• Department of Health (2000) The NHS plan A plan
  for investment, A plan for reform. London HMSO
• Department of Health (2004) The National Services
  Framework for Renal Services Part One Dialysis
  and transplantation Department of Health.
• 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
• Marteau, T.M., Dormandy, E. Michie S. (2001) A
  measure of informed choice Health Expectations 4
  99-108
• OConnor, 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

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Other references of interest

• Database of Individual Patient Experiences
  http//www.dipex.org/
• Flesch R (1948) A new readability yardstick.
  Journal of Applied Psychology 32 221-233
• Ley P. Florio T. (1996) The use of a
  readability yardstick Psychol Health Med 17-27
• 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