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Guías de Práctica Clínica (GPC) y la perspectiva de los
pacientes: Mejorando la toma de decisiones
LA TOMA DE DECISIONES COMPARTIDAS Y
LAS GUÍAS DE PRÁCTICA CLÍNICA
Shared decision making and clinical guidelines
Dunja Dreesens MA MSc BA
Maastricht University & Knowledge Institute of
Medical Specialists
On today’s agenda
•
•
•
•
•
Intro
EBM & SDM shortly revisited
Implementing SDM
SDM and CPG
MAGIC
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País-bayos
0.3fte
0.7fte
Maastricht
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Work environment (1)
Knowledge Institute of Medical Specialists:
• Supporting 32 Associations of Medical
Specialists
• 34 fte (45 employees)
• 30% PhD
• 150 projects (65% CPG, 5-10% pat.tools)
• Guideline budget approx. € 4m per year
• Guideline database www.richtlijnendatabase.nl
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Work environment (2)
Several projects:
• Guidelines
• Quality cycles
• Option Grids
• Implementation of guidelines
Responsible for dossier Implementation
PhD: “In it together: what happens between
doctor and patient whilst deciding about the
patient’s care” (2018)
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EBM and SDM; two worlds?
• Sackett et al
• 30 – 40 years
ago
• Tool: guideline
• Issue:
implementation
• Charles et al
• 30 – 40 years
ago
• Tool: decision aid
• Issue:
implementation
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Remember Sackett et al?
"Evidence-based medicine is the
integration of best research evidence with
clinical expertise and patient values."
However the scientific evidence fails us for
several reasons …
Sackett D et al. Evidence-Based
Medicine: How to Practice and Teach
EBM, 2nd ed., 2000
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Questions
relevant to
clinicians +
patients?
Clinicians and
patients not involved
in research agenda:
Low priority questions
addressed
Appropriate
design and
methods?
Accessible full
publication?
Unbiased and
usable report?
Over 50% of studies
of low
methodological
quality
Over 50% of studies
never published in
full
Over 30% of trial
interventions not
sufficiently described
Inadequate
replication of initial
observations
Biased
underreporting of
studies with
disappointing
results
‘Evidence-biased medicine’
RESEARCH WASTE
Chalmers et al. Lancet 2009
Moher D et al. Lancet 2016
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Other problems & challenges
•
•
•
•
Boyd CM, et al.. JAMA 2005;294:716-24
Multimorbidity
BMJ 2009;339:485
Treatment burden
Interpreting evidence & viewpoints
Personalising:
Lee et al.
Health Expect 2010
– Conserving the breast top priority:
Clinician: 72%
Patient: 7%
– Preference high dosage RT
Stalmeier et al
Clinician: 48%
Patient: 28%
(2007)
J Clin Oncol
– Preference low dosage RT
Rad.ther: 72%
Patient: 52%
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But how about GRADE?
Adapted from a GRADE publication
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Implementation project
• Recommendations mainly based on scientific
evidence
• Lesser attention to/weight on clinical practice
and patient preferences when formulating
recommendations
• Is that a reason why implementation CPG is
lacking?
• If no patient preferences in recommendations,
how to use in SDM? How to translate into
PtDAs?
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NICE approach CPG and SDM
• Patient involvement can lead to
recommendations that address issues of
key concern to patients
• Guideline recommendations should be
written so they promote SDM
• Examples:
– CPG RTI: antibiotics prescription
– Medicine adherence guideline
Stokes, T; H&W 2010;53(1):20-1
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CPG implementation, SDM &DAs
• Direct involvement of patients in guideline development &
maintenance
• Development of patient information and DAs (based on
guidelines), again with patients
• Initiatives such as: Choosing Wisely, Deciding together
• Working together with umbrella Patient Federation and
DCGP to add patient information on second care on
thuisarts.nl (“trustworthy source” concept)
• Development of patient information enforces and
stimulates the implementation of guidelines
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Enter SDM?
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Remember Charles et al?
• (S)DM framework: 3 ‘pure’ types
• SDM a cautionary tale:
– Ambiguity and inconsistency of SDM definitions
– SDM does not equal DAs
– Variations in patient and physician SDM
preferences
– Increase of number and range of goals for SDM
(and PtDAs)
– Lack of well documented support for evaluation
criteria of DA quality
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A notion to ponder on…
• Deber (1996): “… making decisions
about own one’s health consists of
‘problem-solving’ and ‘decision making
that requires the contribution of patients’
values and preferences’, while most
patients do not wish to be involved in the
first one, most would like to be involved
in the decision making process.”
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Examples from the real world
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We are already doing it!
Patient judgement of care delivery at Maastricht hospital
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We are already doing it!
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Doctor knows best… (2011)
•
•
•
•
•
•
•
Video recordings of consultations
25 patients with diagnosis cancer
10 radio therapists (LUMC, Leiden NL)
Time of consultation 48min’s (± 16min’s)
> 1 option discussed with 10 patients
Option no-treatment with 0 patients
After 42 min’s: “Understood?”; after 45
min’s: “Any questions?”
Pieterse A, et al. Patient Educ Counseling 2011;85:e251–e259
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Doctor still knows best… (2013)
• Clinicians said they
need to involve patients
• However, when looking
in practice…
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SDM in NL in 2011
• International conference on SDM
• Not ready for nationwide implementation
• Need for concerted action on:
– Educating professionals
– Empowering patients
– Making high quality DAs publicly accessible
Van der Weijden et al, 2017, ZEFQ (approved for publication)
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SDM in 5 EU countries (2015)
Quality assessment of readiness for
mainstream implementation of SDM in 5
European countries
Factors
Netherlands
Spain
Research evidence
A number of studies in
oncology and evaluation
of PtDAs. Less focus on
changing professional
behaviour and
implementation.
SDM studies into cancer
care, mental health
osteoarthritis, diabetes,
primary care and some
rare diseases, including
evaluation of DAs,
measurement and
implementation issues
Medical leadership
Some medical opinion
leaders are promoting
SDM
SDM is promoted by
medical and nursing
leaders in several areas
Van der Weijden et al 2015
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Factors
Netherlands
Spain
Patient
demand
Patient fed. is running a demo
project implementing 3 questions
campaign
Priority of Patient’s Forum and other
associations. Called for declarations by
patient org’s.
Incentives for
clinicians
SDM is encouraged in several
CPG. First guideline with integrated
DA. No direct financial &
professional incentives to
implement SDM
Most professionals understand SDM is
an ethical imperative, but no direct
financial or professional incentive to
practice it. SDM is recommended in
several CPGs
Training &
support
SDM skills training is available on a
small scale as part of research
projects and some faculties
SDM skills are included as a component
of some specialist training prog’s.
Evaluation of those is now priority.
Availability of
DAs
Subs. of DoH has launched a call
for proposals to develop&host DAs
Web-based info materials available,
which includes DAs
Integration
into EMRs
No
No, but planned as a component of
specific research projects
Institutional
support
Not yet but may emerge from DoH
DoH and other funders are supporting
some initiatives, but no single institution
Certification
schemes
No formal certification scheme, but
IPDAS is used
No formal certification scheme, but DoH
is interested (Spanish IPDAS version)
Measurement
& feedback
Work is underway to develop and
validate Dutch versions of SDM-Q9, CollaboRATE & OPTION-5
Work is underway but better measures
are needed
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Barriers and facilitators (1)
HC professional might misjudge this
Gravel et al 2006 SR
Barriers:
• Time constraints
• Lack of SDM applicability due to:
– Patient characteristics
– Clinical situation
• Perceived patient preferences for a DM
model
• Not agreeing with asking patient about
preferred DM role
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Congruent with change management theory
Barriers and facilitators (2)
Facilitators:
• Motivation of health professional
• Perception that SDM will lead to:
– Positive effect on clinical process
– Positive impact on patient outcomes
• Patient preferences for DM fitting a SDM
model
• Characteristics of patient
Gravel et al 2006 SR
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Barriers – NL (1)
Innovation
Barriers
HCP
Unclear concept, lack of uniform language
Unattractive concept for biomedically oriented clinicians
Low quality PtDAs
Users
Barriers
HCP
Negative attitude (“My patients are not SDM competent”
Lack of awareness on suboptimal performance (“I do
SDM” – optimistic bias)
Patients
Lack of awareness of equipoise, optimistic bias
Lack of knowledge on SDM, low expectations
Lack of knowledge on health situation
Overload of information in PtDAs
Too much uncertainty in population-based estimates
Low health literacy
Van der Weijden et al 2017, ZEFQ (in press)
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Barriers – NL (2)
Direct social context, team
Barriers
HCP
Lack of role models
Lack of support by team members
Medical-technical focus in MDT
Lack of clear responsibility for SDM
Patients
Fear to be judged as awkward patient
Lack of time for reflection due to high-speed pathway
Lack of support in deliberation at home
Local/regional organisation
Barriers
HCP
Wrong time of SDM
Lack of support by management
Lack of feedback on performance
Lack of (financial) incentives
Van der Weijden et al 2017, ZEFQ (in press)
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Implementation strategies – NL (1)
• Innovation level:
– Accredited e-learning
– Deliberately introduction of SDM in slipstream of
personalised medicine
– National guidance containing quality criteria
• User level:
–
–
–
–
Instruction on evidence underlying 3Q
Training, audit and feedback
Patient versions of CPGs, PtDAs linked to CPGs
Open access to EMR
Van der Weijden et al 2017, ZEFQ (in press)
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Implementation strategies – NL (2)
• Social context, team level:
–
–
–
–
–
–
Train the trainer in implementation projects
Courses for postgraduates
Redesign of MTD
Timing of talking options in clinical pathway
Listening time
Audiotaping consultation
• Local organisation level:
–
–
–
–
Delegation of SDM to primary care
Hospital boards sign Salzburg Statement
Use of OPtion5, SDMQ, CollaboRATE
Insurers negotiate care contracts based on SDM performance
Van der Weijden et al 2017, ZEFQ (in press)
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Implementation strategies elsewhere
• AHRQ – The SHARE approach
• Dartmouth-Hitchcock – Decision support tool kit for
primary care
• MacColl Center – Integrating PDAs into primary care
practice: A toolkit to facilitate SDM
• Picker Institute Europe (urology)
• Webinars:
– http://www.pcpci.org/resources/webinars/shared-decision-makingwhat-why-how  SDM: What, why & how
– http://www.pcpci.org/resources/webinars/ready-set-share-toolsimplementing-shared-decision-making  Tools for implementing
SDM
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SDM NL in 2017… (1)
• A lot of buzzing around SDM with
government and policy makers
• SDM currently high on the agenda of
patients ánd professionals (Vision 2025)
• Clinical opinion leaders
• 98% of patient panel mostly or always
opting for SDM model
 Does this quicken the pace to nation
wide implementation?
Van der Weijden et al, 2017, ZEFQ (approved for publication)
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SDM NL in 2017… (2)
• There is a growing number of initiatives
that really target implementing SDM:
–
–
–
–
–
–
–
Central governance of PtDAs
Postgraduate training
Collaborative learning in 12 of 80 hospitals
National campaigns to raise awareness
Funding of implementation projects
PREMs
Integrating goal setting models with SDM
Van der Weijden et al, 2017, ZEFQ (approved for publication)
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SDM and clinical guidelines
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PhD Research (1)
CPG Palliative Care for Children & SDM:
• Symptoms
• Shared decision making
• Organisation of care
• Developed & authorized by broad coalition of parties
• To explore:
– If paediatricians perceive the guideline Palliative Care for
Children as beneficial in engaging patients, and their parent(s)
in the palliative care process, and sharing decision-making;
– How they feel about SDM
Dreesens (in progress)
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SDM and CPG palliative care
Recommendations on SDM, e.g.:
• Inform child a/o parents about the different steps in palliative care
and hand over a brochure on the different aspects on DM in
palliative care
• Ask child a/o parent at various moments which role they’d prefer
in the decision making
• Clarify goals on either side
• When talking with child a/o parents avoid ‘condemnatory’
language, and jargon, and repeat what has been said
• HC professionals use one digital file, which is also accessible for
child and parents  the file contains the minutes of the team
consult and opinion of parents (child not mentioned!)
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SDM and CPG palliative care
Results (1):
• Most of the interviewees did not use the guideline or
were not aware of its existence
• Some who did knew it, thought it wasn’t suitable for
their specialism or didn’t get round to familiarize
themselves with it in detail yet
• Easier to share decisions on palliative issues than on
regular care decisions
• When asked to describe SDM most of the
interviewees answered: multidisciplinary team meeting
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SDM and CPG palliative care
Results (2):
• Most of the interviewees felt that primers for SDM
integrated in the recommendations could support them
in engaging patients in shared decision-making
• However, most paediatricians were not very keen on
using decision aids during consultation, as they were
afraid of losing contact with the patient
• Only few:
– Acknowledged that the shown decision aids could be useful for the
patient – re-reading it afterwards as patients do not remember
everything being said during consultation – or
– Discovered that the decision aid covered subjects they did not
address during consultation, so it could function as checklist for the
paediatrician
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SDM and CPG palliative care
Conclusion:
• Doctors still hold different views on SDM: their
interpretation of the concept as well as their use of the
concept
• SDM depends on subject at hand
• It seems that doctors project their preferences – or
their perceived preferences of patients – on how to
conduct a consultation instead of asking patients
themselves what they’d prefer
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Reshaping recommendations?
Original:
First choice
recommendation for
pain relief is drug X in
dose A.
Adapted:
• First choice
recommendation for pain
relief is drug X in dose A.
• Together with
child/parents one can opt
for lower dose B.
– For some children the sideeffects of dose A do not
counterbalance the pain
relief effects (ref xxx).
– There is heterogeneity in
preferences: 65% opt for
dose A, 35% for B. (ref. xxx)
Van der Weijden T et al. BMJ Qual Saf 2013;22:855.
Van der Weijden T, et al. J Clin Epid 2012.
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Reshaping recommendations?
Indication for back surgery after > 6 weeks
conservative treament of HNP
Continued conservative treatment
Surgical treatment
Interventon
Gedoseerd bewegen, eventueel analgetica en/of
fysiotherapie
Operatie, waarvoor ziekenhuisopname en narcose
Course of
complaints
Gemiddeld enkele weken langer klachten (later
terug in arbeidsproces).
Gemiddeld enkele weken korter klachten (eerder terug
in arbeidsproces).
Bij circa 60% van de patiënten spontane
verbetering. Bij 40% vindt na gemiddeld 20
weken alsnog een operatie plaats.
3,2% van de patiënten ontwikkelt recidiefklachten,
waarvoor 2e operatie nodig is.
Recovery
after 1 year
Na 1 jaar is 95% van de patiënten (bijna)
volledig hersteld.
Na 1 jaar is 95% van de patiënten (bijna) volledig
hersteld.
Complications
Gemiddeld langer en meer analgetica (met
mogelijke complicaties) nodig dan na operatieve
behandeling.
Bloeding (5%), duralek met liquorlekkage (3-4%),
wondinfectie (2-3%), exploratie van het verkeerde
niveau (1,2-3,3%).
Ernstige complicaties met mogelijk (toename van)
uitvalsverschijnselen (circa 1%):
spondylodiscitis < 1%;
zenuwwortelbeschadiging (0,3%);
liquorfistel (0,1%);
epiduraal hematoom met caudasyndroom (0,1-0,2%);
retroperitoneale vasculaire laesie (0,05%).
DCGP guideline lumbosacral syndrome 2015
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And / or use of decision aids?
• DAs are interventions or tools designed to
facilitate SDM and patient participation in
healthcare decisions
• Cochrane review:
Stacey D, et al.
Cochrane Library 2014.
• Several types  PhD research
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Dreesens, Van der Weijden, Grimshaw (in progress)
PhD research (2) - framework
• Review – 67 knowledge tools
• Delphi – 13 tools
• Framework patient direct knowl.tools
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Option Grids
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Drug fact box – risk chart
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Others
https://www.mumc.nl
/actueel/nieuws/inter
actieve-keuzehulpgelanceerd-voorborstkankerpatienten
http://www.psyc
h.usyd.edu.au/c
emped/com_que
stion_prompt.sht
ml
https://www.keuzehulp.info/pp/knieslijtage/intro/3
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DECIDE and MAGIC
• EU project:
Developing and
Evaluating
Communication
strategies to support
Informed Decisions
and practice based on
Evidence
• MAGIC: Making
GRADE the Irresistible
Choice
Vandvik P et al. Chest 2013;144:381
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MAGIC-programme (1)
Implementing SDM in NHS: challenges
• We do it already
• We don’t have the right tools
• Patients don’t want SDM
• How can we measure it?
• We have too many other demands and
priorities
Joseph-Williams et al BMJ 2017;357;j1744
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MAGIC-programme (2)
Recommended solutions:
- Interactive skills workshops
- Development of brief tools
- Patient activation and preparation
- Measurement
- Organisation buy-in/senior-level support
- Collaborative and facilitated approach
Joseph-Williams et al BMJ 2017;357;j1744
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MAGIC-programme (3)
Joseph-Williams et al BMJ 2017;357;j1744
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Project Option Grids - preliminary
Aim to assess attitude and use of option grids:
- Prove added value of DAs (no felt principal/ethical imperative)
- Time: too time consuming or gain of time after consult
- Expected compliance of patient after use DA
- Trustworthy content developed by independent group, and not
pharma
- Provision of info with DA is more objective H&B, RR en AR)
- Already practicing SDM, and able to tell want patient wants so no
need for DAs
- Not used during consultation, but given to take home (as pat.info)
- Too few options no added value of DA; too complex or many
options, suggested to simplify
Venhorst & Geltink (in progress)
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Implementation @organisation
Develop
consensus
between
leadership, mgt
and clinicians onn
importance of SDM
Acquire quality
decision aids and
make them
available to
clinicians and
patients
Embrace
SDM
Recognise
and
address
barriers
Make
DAs
available
Measure,
monitor
and
feedback
Need for HOW next to WHAT!
SDM in health care, 3rd ed.; chapter 5
Identify
organisational
barriers to SM and
take steps to
overcome them
Use reliable, valid
and meaningful
measures of impl.
of SDM and
provide feedback
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Quality cycle
Describes 3 steps:
• Descriptions of
good care
• Implementing &
applying
• Measuring and
evaluating
At 3 levels preferably:
• Micro (HCP – patient)
• Meso (organisation)
• Macro (system)
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Some afterthoughts
• Emotions
• Behaviour patient & clinician
• Health (il)literacy & numeracy
It is difficult to
be assertive
when naked
Quote:
“If it doesn’t matter which
option they choose, why
ïnvolve them in decision
making?”
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In conclusion
•
•
•
•
•
•
Momentum for SDM
Instrumental approach
Training & role models
Total context / at all levels
Behavioural sciences
Development   implementation
methodology
• SDM & CPG worlds converging
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Gracias!
!
Contact details:
[email protected]
or
[email protected]
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