uk renal registry 2012 annual audit meeting october 9 th 2012 dr aine burns consultant nephrologist...
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UK Renal Registry 2012 Annual Audit Meeting
October 9th 2012Dr Aine Burns
Consultant NephrologistCentre for Nephrology Royal Free NHS Foundation
Trust London
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Conservative Kidney Management How and what can we audit?
October 9th 2012Dr Aine Burns
Consultant NephrologistCentre for Nephrology Royal Free NHS Foundation
Trust London
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Session 5:Which decision in elderly with CKD?
International Seminar on Renal Epidemiology
Dr Aine Burns MD FRCP MSc Med Ed. Consultant Nephrologist, Centre for Nephrology Royal Free Hospital
Campus UCL London UKParis 22-23May 2012
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Which decision in elderly with CKD? Dialysis withholding in CKD 5!
"Maximum conservative management for elderly patients with renal failure stage 5"
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Conservative Kidney Management: How and what can we audit?
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Conservative Kidney Management: How and what can & should we
audit?What is important to us and what is important to our patients and their
close persons???
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Conservative Kidney Management: How and what can we audit?
First instance numbersQuality standards which deliver on
their intent
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Overview
• Where we have come from• Where we are now• Where we want to go
• MCM data set and Quality outcome measures
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A remarkable journey!• 1964: Prof. Robin Eady and
“the lucky 13!”
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A remarkable journey!• 1964: Prof. Robin Eady and
“the lucky 13!”
• 2012: Almost 100 and going
strong!
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Terminology :~
• Conservative management• Maximum conservative management• Renal supportive care• Residual renal support• Conservative kidney care• The non-dialysis option
• The no clearance clinic!!
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A remarkable journey!• 1964: Prof. Robin Eady and “the
lucky 13!”
2002-2012:MCM
• 2012: Almost 100 and going
strong!
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LC by Age - Mar 2012
40-497% 50-59
9%
80-8931%
70-7929%
60-6914%
90-997%
Under 301%
30-392%
No. of Patients: 1243
PD by Age - Mar 2012
40-49
13%
50-59
18%
60-69
19%
70-79
22%
80-89
15%
Under 30
8%
90-99
0%30-39
5%
No. of Patients: 96HD by Age - Mar 2012
30-396% 40-49
13%
50-5916%
70-7927%
80-8914%
60-6920%
90-991%
Under 303%
No. of Patients: 707Tx by Age - Mar 2012
30-3916%
40-4923%
50-5924%
60-6918%
Under 3010%
70-798%
80-891%
No. of Patients: 1022
MCM All Sites
40-49 , 0, 0%
50-59 , 1, 1%
70-79 , 22, 18%
80-89, 76, 60%
90-99, 21, 17%
Under 30 , 1, 1%
60-69 , 4, 3%
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Mission :D
• Reverse the reversible• Preserve residual renal function • Treat inter-currant illnesses• Identify and treat symptoms• Maximize functional status• Plan end of life care• Support family and close persons• Minimize futile interventions
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Conservative Kidney Management: How and what can we audit?
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Not easy :??
• Frailty• Dementia• Cognition• Depression• Loneliness• Bereavement• Mobility• Functional status• Advance directives• Capacity
• Co-morbidity• Inter-currant illness• Falls• Difficult conversations• Ceilings of care• Family wishes• Absent relatives• Hospital visits• Shared care• Cost
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Decision aids
Trade offs
Health literacy
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Not easy :??
• Frailty• Dementia• Cognition• Depression• Lonleiness• Bereavement• Mobility• Functional status• Advance directives• Capacity
• Co-morbidity• Inter-currant illness• Falls• Difficult conversations• Ceilings of care• Family wishes• Absent relatives• Hospital visits• Shared care• Cost
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Months on Dialysis
908478726660544842363024181260
Cum
Sur
viva
l1.0
.9
.8
.7
.6
.5
.4
.3
.2
.1
0.0
< 50 Yearsn = 67
50 - 65n = 77
65 -75n = 98
> 75 Yearsn = 48
P < 0.0001
P = 0.0007
Age and Survival
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Survival:
Carson & Burns, CJASN 2008
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Survival:
Carson & Burns, CJASN 2008
The MCM group were on average 6 years older than the dialysis group.Co-morbidity identical(Charlston = 7.2)
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Survival: Hospital free days
Carson & Burns, CJASN 2008
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Symptoms in CKD 5 Murtagh et al. 2007
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Symptom burden
Dinneen & Burns, British Renal Association Abstract 2011
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Performance status: 2002
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Performance status
End-Stage Renal Disease: A New Trajectory of Functional Decline in the Last Year of LifeFliss E.M. Murtagh PhD, Julia M. Addington-Hall PhD, Irene J. Higginson PhD. Journal of the American Geriatrics Society Volume 59, Issue 2, pages 304–308, February 2011
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Patients were willing to forgo 7 months of life expectancy to reduce the number of required visits to hospital and 15 months of life expectancy to increase their ability to travel.
Interpretation: Patients approaching end-stage kidney disease are willing to trade considerable life expectancy to reduce the burden and restrictions imposed by dialysis.
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Treatment preferences (dialysis v. conservative care) of 105 patients with end-stage chronic kidney disease.
Morton R L et al. CMAJ 2012;184:E277-E283
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Quality of death:
• MCM patients were 4 times more likely to die at home or in a hospice
• Final illness short 3-7 days• eGFR ± 4ml/min• Pulmonary oedema rarely an issue
Carson & Burns, CJASN 2008
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MCM: A new phase in a remarkable journey
• Legitimate & positive treatment option chosen by approx 10% of our elderly patients which delivers:– maintained functional status for many months– a short final illness – 4 times greater chance of dying at home or in
hospice setting– intervention free out of hospital days may not
differ much from patients who choose dialysis
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• Will home assisted PD influence numbers choosing MCM??
• What about un-captured patients?
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Key results During the period 2003–2007, there were nearly 21,500 new cases of ESKD in Australia, amounting to about 21 cases per
100,000 people. For every new case who receives dialysis or transplant, there is about one new case that does not.
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Merci!
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Feedback invited
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MCM data set??
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Renal Modality Trend Analysis – Mar 2012
0
200
400
600
800
1000
1200
1400
HD
CAPD
LC
TX
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Renal Modality Age Analysis: LCC = eGFR<30 diabetic, <20 non-diabetic
LC by Age - Mar 2012
40-497% 50-59
9%
80-8931%
70-7929%
60-6914%
90-997%
Under 301%
30-392%
No. of Patients: 1243
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Renal Modality Age Analysis: LCC = eGFR<30 diabetic, <20 non-diabetic
LC by Age - Mar 2012
40-497% 50-59
9%
80-8931%
70-7929%
60-6914%
90-997%
Under 301%
30-392%
No. of Patients: 1243
PD by Age - Mar 2012
40-49
13%
50-59
18%
60-69
19%
70-79
22%
80-89
15%
Under 30
8%
90-99
0%30-39
5%
No. of Patients: 96HD by Age - Mar 2012
30-396% 40-49
13%
50-5916%
70-7927%
80-8914%
60-6920%
90-991%
Under 303%
No. of Patients: 707Tx by Age - Mar 2012
30-3916%
40-4923%
50-5924%
60-6918%
Under 3010%
70-798%
80-891%
No. of Patients: 1022
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Conservative Kidney Management: How and what can we audit?
Demographics Co-morbidity
SurvivalRecorded cause of death
Place of deathReligion
Post-code /deprivation score
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• Symptom burden• Performance status/trajectories• Survival & hospital free days• Quality of death• Decision making
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• Symptom burden• Performance status/trajectories• Survival & hospital free days• Quality of death (preferred place of death)• Decision making
– late changes in modality– advanced care plans/advanced directives,– will availability of home assisted PD influence
patient/family choice
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Decision making
• Shared decision making• Why do patients choose MCM?• How & when should we have these
conversations?• Do many patients change their minds?
• The time factor!!
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Decision making
• Shared decision making (national shared decision making programme)
• Why do patients choose MCM? (don’t want to be a burden/ don’t want change/ all religions & ethnic groups more or less equally represented)
• How and when should we have these conversations? (? as early as possible)
• Do many patients change their minds? (not many)• The time factor!! Value of trained nurse specialists
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New method for estimating the total incidence of ESKD The number of non-KRT-treated cases is estimated using a defined set of cause of death codes in the national mortality data, with the aim of counting people who died with ESKD in the study period. This number can then be added to the already available number of dialysis and transplant cases recorded on a national register. Data linkage is used to ensure that people treated with dialysis or transplant who die during the study period are only counted once.
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Ethnicity
LCC Pop.Deceased MCMx Current MCMx
Pop.
N=259 N=24 N=43
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Current MxCM patients: N= 43Deceased MxCM patients: N = 24
Religious Beliefs
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Patient’s AnxietiesPatient’s Anxieties
What will happen if I don’t have
dialysis
What will the Doctor think if I don’t have
dialysis
How longwill it take
Where will I Die
Can I still contact you
Will I still be Will I still be followed up followed up
at clinicat clinic
What will my death be like
How will my family cope
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Nephrologist’s AnxietiesNephrologist’s Anxieties
What will happen if he/she don’t have
Dialysis?What will the Patient think if I don’t offer
Dialysis?
How longwill it take to explain the
choices andmake sure this
Pt. Understands?
Will a hospice accept him/her?
What is my Legal position?
Will I still have to follow them up
in clinic?
How long will he/she survive?
Will he/she need frequent admissions
?
We have no space!
Will dialysis prolong life here?
If this were my grandma
what would I/she want?
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Current MCMx patients: N= 43
COENoneJewishCatholicGreek OrthodoxBuddistBaptistChristianMuslimHindu
Deceased MCMx patients: N = 24
Religious Beliefs
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• Attention to the clinical trajectory is required to calibrate expectations and guide timely decisions, but prognostic uncertainty is inevitable and should be included in discussions with patients and caregivers.
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Renal Yr-Yr Trends – Mar 2011/12
0
500
1000
1500
2000
2500
3000
3500
Mar 11 Mar 12
Transplant
PD
Low
HD
Modality Type Mar 11 Mar 12 % Increase
HD 690 707 2.40%
Low 1127 1243 9.33%
PD 80 96 16.67%
Transplant 916 1022 10.37%
2813 3068 8.31%