Transcript Gastroesophageal Reflux and Chronic Pediatric Sinusitis

Consumer Involvement in
Guideline Development
Why Every Guideline Needs It
Richard M. Rosenfeld,
MD, MPH
Professor and Chairman of Otolaryngology, SUNY Downstate
Senior Consultant for Guidelines and Quality, AAO-HNS
Chair Emeritus, Guidelines Int’l Network – North America
Who are we?
The American Academy of Otolaryngology—
Head and Neck Surgery (AAO-HNS) is the
world's largest organization representing
specialists who treat the ear, nose, throat,
and related structures of the head and neck.
The Academy represents more than 12,000
otolaryngologist—head and neck surgeons
who diagnose and treat disorders of those
areas.
Headquarters in Alexandria, VA
EMPOWERING PHYSICIANS TO DELIVER THE BEST PATIENT CARE
AAO-HNS Guideline Usage Summary
National Guideline Clearinghouse & Google Scholars
Guideline title
Date
released
Page views
(NGC) 8/14
Citations
(GS) 8/14
Acute otitis externa
7/14/06
102,556
128
Adult sinusitis
8/22/08
61,861
611
Cerumen impaction
4/17/09
49,353
66
Benign paroxysmal positional vertigo
4/17/09
57,630
299
Hoarseness (dysphonia)
4/23/10
46,048
122
Tonsillectomy in children
3/15/11
48,594
196
PSG for SDB prior to tonsillectomy in children
12/1/11
32,324
63
Sudden hearing loss
4/1/12
42,726
108
Improving voice outcomes after thyroid surgery
6/1/13
8,445
27
Tympanostomy tubes in children
7/1/13
8,662
34
11/4/13
6,043
9
464,242
1,663
Bell’s palsy
TOTAL
83 Standards
20 Standards
Institute of Medicine 2001 – http://www.iom.edu
Standards for Developing
Trustworthy Clinical Practice Guidelines
Standard 3. Guideline Development
Group (GDG) Composition
3.2 Patient and public involvement should
be facilitated
by including (at least at the time of clinical
question formulation and draft CPG review)
a current or former patient,
and a patient advocate or patient/consumer
organization representative in the GDG
http://www.iom.edu/Reports/2011/Clinical-Practice-Guidelines-We-Can-Trust/Standards.aspx
www.g-i-n.net
Ann Intern Med 2012; 156:525-531
Begin with the End in Mind
Habit #2, Stephen Covey
Consumers
Covey S. The 7 Habits of Highly Effective People. Fireside Press, 1989
Begin with the End in Mind
Habit #2, Stephen Covey
Consumers
X
Consumers do not have to be content experts!
(the same applies to clinicians)
AAO-HNS Guideline Action Statements
with Strong Consumer Influence

The clinician should advocate for pain management after tonsillectomy and
educate caregivers about the importance of managing and reassessing pain.

The clinician should educate the patient about the potential impact of
thyroid surgery on voice once a decision has been made to have surgery.

Clinicians should educate patients with idiopathic sudden sensorineural
hearing loss about the natural history of the condition, the benefits and risk of
interventions, and the limitations of existing evidence regarding efficacy.

In the perioperative period, clinicians should educate caregivers of children
with tympanostomy tubes regarding the expected duration of tube function,
recommended follow-up schedule, and detection of complications.

Clinicians should inform patients how to administer topical drops for acute
otitis externa (swimmer’s ear).
Source: AAO-HNS Clinical Practice Guidelines
Post-Tonsillectomy Pain Management
Education for Caregivers
1. Throat pain is greatest the first few days and may last up to 2 weeks
2. Encourage your child to tell you if he or she has throat pain since
pain may not always be expressed or recognized promptly
3. Make sure your child drinks plenty of fluids after surgery. Staying
well hydrated is associated with less pain.
4. Ibuprofen can be used safely for pain control after surgery.
5. Many clinicians recommend not waiting until your child complains of
pain. Instead, the pain medication should be given on a regular
schedule.
6. Expect your child to complain more about pain in the mornings;
this is normal. Call your health care provider if you are unable to
adequately control your child’s pain.
AAO-HNS Tonsillectomy CPG. Otolaryngol Head Neck Surg 2011; 14(Suppl):S1-S30
Clinical Infectious Diseases Advance Access, September 9, 2012
Sir William Osler
Canadian Physician, 1849-1919
Common sense
in medical matters
is rare, and is usually
in inverse ratio to
the degree of
education.
Consumer Involvement in Guidelines
What are the Possibilities?
What do Consumers contribute to GDGs?
Passion
Perspective
Skepticism
Respect for harms
Patient education
Shared decisions
Arch Intern Med 2012; doi:10.1001/2013.jamaintermed.56
Barriers to Capacious, Non-Foreclosed Thought
Rita Charon, MD, PhD
Director, Narrative Medicine Program, Columbia, University
Lack of
Time
Habits and
Routines
Narrow
Range of
Thought
Fear of
Novelty &
Uncertainty
Foreclosed = rule out or prevent (a course of action)
Policy Statements as Behavior Constraints
Policy strength
Implication for clinicians
Pt. preference
Strong
recommendation
Follow unless a clear and compelling
rationale for alternative approach is present
Limited role
Recommendation
Generally follow a recommendation, but
remain alert to new information
Should be
considered
Option
Be flexible in decision making regarding
appropriate practice, although bounds may
be set on alternatives
Substantial
influencing role
No
recommendation
Feel little restraint in decision making and
be alert to new published evidence that
clarifies the balance of benefit vs. harm
Substantial
influencing role
Pediatrics 2004; 114:874-877
Key action statement with
recommendation strength
and justification
Action statement profile:
 QI opportunity:
 Aggregate evidence quality:
 Confidence in evidence:
 Benefit:
 Risk, harm, cost:
 Benefit-harm assessment:
 Value judgments:
 Intentional vagueness:
 Role of patient preferences:
 Differences of opinion:
 Exclusions:
Action Statement Profiles and
Guideline Development
1. Encourage an explicit and transparent
approach to guideline writing
2. Force guideline developers to discuss and
document the decision making process
3. Create “organizational memory” to avoid
re-discussing already agreed upon issues
4. Allow guideline users to rapidly understand
how and why statements were developed
5. Facilitate identifying aspects of guideline
best suited to performance assessment
Tympanostomy Tube CPG
Recurrent Acute Otitis Media (AOM) with Middle Ear Effusion (MEE)
Clinicians should offer bilateral tympanostomy tube insertion in children with
recurrent AOM who have unilateral or bilateral MEE at the time of assessment for
tube candidacy. Recommendation based on RCTs with minimal limitations and a
preponderance of benefit over harm.
• Benefits: Mean decrease of about 3 episodes of AOM per year; ability to treat future
episodes with topical antibiotics instead of systemic; reduces pain with future AOM
• Level of confidence in evidence: Medium; some uncertainty regarding the magnitude of
clinical benefit, because of heterogeneity in the design and outcomes of trials
• Value judgments: In addition to the benefits seen in RCTs, the presence of effusion at the
time of assessment served as a marker of diagnostic accuracy for AOM
• Role of patient preferences: Substantial role for shared decision making regarding the
decision to proceed with, or to decline, tympanostomy tube insertion
Otolaryngol Head Neck Surg 2013; 149(Suppl):S1-35
EMPOWERING PHYSICIANS TO DELIVER THE BEST PATIENT CARE
Plain Language Guideline Summaries
What Belongs in Patient and Consumer Versions?
1.
2.
3.
4.
5.
Statement of purpose
Description of how guideline was developed and to whom it applies
Definitions, diagnostic criteria, natural history, prognosis
Summary of key action statements (recommendations)
Decision aids, especially when role
for shared decisions is significant
6. Comparisons of harms and benefits
for main treatment alternatives
7. Instruction aids, self-care advice
8. Information to help patients navigate
the health care system
Inspired by: Santesso NAM. Dissemination of Clinical Practice Guidelines
to Patients and the Public. Graduate Thesis; McMaster University, 2014
An Educated Consumer…Can be the Best
Member of a Guideline Development Group
The challenge is now for the
medical profession to…develop
alliances with consumers to
move forward toward a wider
recognition of the uncertainty
and weaknesses of medicine
and the biases in the process
of setting research priorities.
Alessandro Liberati
BMJ 1997; 315:499
Thank You for Your Kind Attention!
Richard M. Rosenfeld, MD, MPH – [email protected]