values and preferences in clinical practice guidelines gordon guyatt clarity research group mcmaster...
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Values and Preferences in Clinical Practice Guidelines
Gordon Guyatt
Clarity Research Group McMaster University
Plan
what is the problem?what is the problem?
whose values and preferences?whose values and preferences?
how can we find out about values how can we find out about values and preferences?and preferences?
applying best estimates of V and Papplying best estimates of V and P
What is the problem?
almost all decisions/recommendations almost all decisions/recommendations involve tradeoffsinvolve tradeoffs
benefits versus harms, burden, costs antithrombotic therapy
thrombosis reduction vs bleeding, burden, costs
tradeoffs require V and P judgments value reducing MI, stroke, DVT vs bleed and
burden
Whose values and preferences?
guideline panel membersguideline panel members
health care providershealth care providers
policy makerspolicy makers
subjects of the guidelinesubjects of the guideline patientspatients general publicgeneral public
How to determine patient values and preferences?
systematic review of patient V and Psystematic review of patient V and P
use guideline panel members use guideline panel members act as proxies for their patientsact as proxies for their patients’’ V and P V and P
patients on panelpatients on panel
collect own values and preferences collect own values and preferences datadata
Systematic review comprehensive searchcomprehensive search
48 studies48 studies 16 a fib, 10 stroke or MI, 5 VTE, 17 burden16 a fib, 10 stroke or MI, 5 VTE, 17 burden
higher disutility on stroke than gastrointestinal higher disutility on stroke than gastrointestinal bleed and much greater disutility on stroke bleed and much greater disutility on stroke than on treatment burdenthan on treatment burden
example of the relative value of health states:example of the relative value of health states: a reasonable trade-off between nonfatal stroke and a reasonable trade-off between nonfatal stroke and
bleeds is a ratio of disutility of 2.1 to 3.1bleeds is a ratio of disutility of 2.1 to 3.1
Using systematic review results systematic review results require systematic review results require
interpretationinterpretation
how should guideline panel proceed?how should guideline panel proceed?
systematic V and P rating exercisesystematic V and P rating exercise
ACCPACCP consider systematic review consider systematic review make ratings for typical patientsmake ratings for typical patients rate scenarios, time frame of one yearrate scenarios, time frame of one year
13
Dead
Full Health
Feeling thermometer:Venous limb gangrene
Minimum
Maximum
Mean
Disutility with stroke in a child
Physical Symptoms
Your child suddenly becomes unresponsive Your child is unable to move one arm and one leg Your child cannot speak to you
Mental Symptoms
Your child is irritable and upset You find it difficult to console your child Family and friends find the diagnosis difficult to
accept
Pain Your child has a headache for a number of days Recovery
Your child’s stay in hospital is prolonged Your child recovers some function, including speech
and movement slowly over weeks to months Your child complains of tiredness for months Your child needs help to attend normal school Your child has multiple hospital visits for
physiotherapy and rehabilitation You must alter your hopes and dreams for your child’s
futureFurther Risk
You are told your child is not at risk of further strokes, You find your child’s ongoing limitations very hard to
accept
14
15
Dead
Full Health
Feeling thermometer:Major stroke in a child
Minimum
Maximum
Mean
Disutility with a gastrointestinal bleed
Symptoms
You feel nauseated and unwell for two days, and then suddenly you vomit blood and feel faint.
Diagnostic tests and treatment
You are taken by ambulance to a busy emergency department. An intravenous catheter is placed and a catheter is placed
through your nose into your stomach to help drain the blood You receive blood transfusions to replace the blood you lost You are admitted to hospital A doctor puts a tube down your throat into your stomach to see
where you are bleeding from and to provide treatment You receive sedation by intravenous to ease the discomfort of
the test You do not require an operation to stop the bleeding You must stop taking your blood thinner; stopping the blood
thinner puts you at risk of developing a new blood clot.Recovery
You stay in the hospital for a few days You feel much better at the end of your hospital stay You need to take pills for the next six month to prevent further
bleeding After that, you are back to normal About 2 weeks after your bleeding you restart your blood
thinning therapy – you worry every day about more bleeding for the first month after restarting
After that, your worry gradually decreases
16
17
Dead
Full Health
Feeling thermometer:Gastrointestinal bleed
Minimum
Maximum
Mean
Key decisions
myocardial infarction = pulmonary myocardial infarction = pulmonary embolus = venous thrombosis = embolus = venous thrombosis = gastrointestinal bleedgastrointestinal bleed
stroke = 3 bleeds (and thus three stroke = 3 bleeds (and thus three of any other major event)of any other major event)
What lowers strength of recommendation?
strong recommendationstrong recommendation confident more good than harmconfident more good than harm almost all informed patient make same choicealmost all informed patient make same choice
tight balancetight balance uncertainty about typical V and Puncertainty about typical V and P uncertainty about variability in V and Puncertainty about variability in V and P
V and P highly variableV and P highly variable
Strong recommendation for Strong recommendation for warfarinwarfarin
Alternatives: experience of clinicians in shared decision making
Patients on panel
often advocatedoften advocated
may be useful in issues overlookedmay be useful in issues overlooked
no guarantee reflects typical V and Pno guarantee reflects typical V and P
V and P can help if disagreementestablish that everyone agrees with
evidence summary
clarify values and preferences
Review evidence about patient V and P
Conclusions
value and preference judgments ubiquitous
panels MUST make judgments explicit quantitation desirable values those who bear consequences weak recommendation more likely
close trade-off uncertainty in typical V and P highly variable V and P
Conclusions
systematic review of V and P – routinesystematic review of V and P – routine
still need panel input still need panel input study results require interpretationstudy results require interpretation results likely incompleteresults likely incomplete
structured elicitation of panel V and Pstructured elicitation of panel V and P
patients on panel – questionablepatients on panel – questionable
expert panel shared decision-makingexpert panel shared decision-making