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Patient decision making about dialysis in End Stage Renal Failure

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Table 1: Percentage of renal units providing written, video taped and verbal information ... Patient decision making in end stage renal failure a qualitative study ... – PowerPoint PPT presentation

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Title: 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

8
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

9
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

10
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
11
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

12
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

13
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.

14
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

15
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.

16
Research questions
  • Are patients making an informed choice?
  • What are the factors that influence decision
    making?
  • How do patients make decisions over time?

17
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)

18
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

19
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

20
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
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