Download Talking to Parents about their Children`s Asthma

Talking to Parents about their
Children’s Asthma
Sally E. Findley
Professor of Clinical Population
and Family Health (in Pediatrics)
Mailman School of Public Health
Columbia University
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Asthma Prevalence Increased
1980-99
• Annual prevalence of asthma has increased
steadily between 1980-1996, from 31.4 to
38.4 (per 1000).
• Asthma rates are 1.14 times higher among
communities of color.
• Highest prevalence is among young children,
5-14 years of age (56.4 per 1000).
• Source: MMWR Surveillance Summaries, March 29, 2002/51
(SS01), 1-13.
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Self-reported asthma
(per 1000)
US Annual Prevalence of Selfreported Asthma Episodes
by Age, 1980-1999
80
70
60
50
40
30
20
10
0
0-4
5 -14
15-34
35-64
65+
Age in Years
1980
1990
1996
1999
Source: MMWR Surveillance Summaries, March 29,2002, 51(SS01); 1-13.
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Self-reported asthma
(per 10,000)
US Asthma-Related Emergency
Department Visits, Hospitalizations,
and Office Visits by Age, 1999
160
140
120
100
80
60
40
20
0
0-4
5 -14
15-34
35-64
65+
Age in Years
Hospitalizations
Office Visits
ED Visits
Source: MMWR Surveillance Summaries, March 29,2002, 51(SS01); 1-13.
Asthma Basics for Children, Mailman School of Public Health, Columbia University
The youngest children bear a
disproportionate share of the
asthma burden
• Children 0-4 years have the highest ED
visit and hospitalization rates
• Asthma management programs need to
expand down to the younger age
groups
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Cities such as NYC have much higher asthma
hospitalization rates
Rate per 1,000 Population
Asthma Hospitalization Rates 1995
12
10
8
6
4
2
0
US
NYS (not including
NYC)
NYC
Source: New York City Childhood Asthma Initiative, NYC DOH
Asthma also keeps children from
school
• 14 million school-days are lost per year
for children, 1996-99
• Each year a child with asthma can
expect to be absent 4 days per year
due to asthma.
• 24% of school-age children also suffer
activity limitation due to their asthma
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Asthma episodes can be prevented
• We do not know yet how to prevent or cure
asthma, but asthma can be managed to
reduce the severity and frequency of asthma
episodes.
• Current high rates of asthma-related
hospitalizations, ED visits and school
absences can be reduced through providing
access to appropriate management of
asthma.
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Background to Our Approach
• In 1999, through the Northern Manhattan
Community Voices project we began working
with a group of NYC early childhood centers
and Head Starts to help them manage
asthma.
• We have developed a program to train the
staff, identify children with asthma, and assist
the parents in developing a strong
partnership with their doctors and the staff to
manage their children’s asthma.
• Presentation today grows out of this work.
Asthma Basics for Children, Mailman School of Public Health, Columbia University
What did Educators want?
• A systematic way of knowing if children
had asthma (not just a cold or flu).
• Know what to do when children had
exacerbations
• Help parents overcome fears and better
manage asthma so children would not
have to stay home when having asthma
symptoms
Asthma Basics for Children, Mailman School of Public Health, Columbia University
What did Parents Want?
• Prompt diagnosis of asthma to avoid the
“dark time” of ER trips without knowing what
is going on.
• More explanations about medications: how
they work, any side effects, limits to their
effectiveness
• More advice on what to do besides
medications, including combining with
traditional treatments
• Assistance in dealing with indoor
environmental triggers
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Shared Desire for Confidence in
Asthma Management
• Know who has asthma
• Have confidence that the management
program is helping the child
• Feel good about how they are handling
asthma exacerbations at home or
school
Asthma Basics for Children, Mailman School of Public Health, Columbia University
The Bottom Line for Parents and
Educators:
Make asthma less scary for the
children
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Gaps in the Application of Asthma
Treatment Guidelines
• NHLBI guidelines released in 1997 outline both
diagnostic and treatment guidelines, yet surveys of
physicians repeatedly show that many patients do
not receive the recommended management.
• The guidelines are not followed because of:
– Lack of awareness or familiarity w. details
– Lack of agreement with guidelines
– Lack of self-efficacy to carry it out properly
– Lack of confidence in outcomes
– Inertia of previous practice
•
Source: Cabana and Lewis. Improving Physician Adherence to Asthma
Guidelines. JCOM. 8(3), March 2001.
Asthma Basics for Children, Mailman School of Public Health, Columbia University
What makes application of the
guidelines so hard for physicians?
• Hard to Track: People with asthma usually are
asymptomatic for most of the time, and asthma
can be overlooked during office visits.
• Continuity of Care problematic: Many episodes
occur at night, when physician offices are closed,
leaving treatment to on-call and ED services.
• Medication Tailoring: Medications need to be
tailored to individual asthma severity.
• Medications only part of the solution: Part of the
management is in trigger management at home
and school.
Asthma Basics for Children, Mailman School of Public Health, Columbia University
What makes asthma management so
hard for parents/patients?
• Here today, gone tomorrow: Periods of symptoms
interspersed with symptom-free periods
• Daily medications, even when feeling fine
• Unpredictability: Don’t know exactly what triggers the
episode
• Complicated medication plan, varies with symptom
intensity and disease severity
• Need to monitor asthma symptoms, the signals for
medication changes
• Fears about medication side-effects
• Medications only part of plan: Trigger reduction also
needed.
Helping parents and providers
move beyond the difficulties
• Promote early diagnosis
• Develop tools to clarify and simplify the
complicated medication management steps
• Find ways to build asthma management into
a regular routine, both for providers and
patients.
• Promote the reduction of environmental and
behavioral triggers to asthma in the child’s
daily life
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Physician Asthma Care Education
Program
• PACE Program to help physicians talk about
asthma with parents/patients, proven
effective in studies conducted by Columbia
University researchers in work with NYC
practices
• Outlines clear steps for incorporating NHLBI
recommendations into daily practice
• Promotes communication strategies for
promoting family and self-management of
asthma.
Source: Clark, NM et al. “Impact of education for physicians on patient
outcomes.” Pediatrics 1998; 101: 831-36.
Asthma Basics for Children, Mailman School of Public Health, Columbia University
PACE Suggestions for Talking
with Parents about Asthma
• Be attentive: Make eye contact, sit same level, no desk
or barriers between you, lean into the conversation
• Ask open-ended questions: What about asthma is hard
for you or your child?
• Get fears out on the table and deal with fears and
concerns right away
• Be reassuring
• Share information interactively
• Tailor the regimen to the family’s daily routines
• Plan how the family and you will make decisions
together
• Set goals for asthma treatment: Find out what the
family wants to achieve
Explaining Asthma
• Provider message:
Explain what
happens during an
asthma attack
– Inflammation: Airway
lining swells and
produces too much
mucus
– Bronchospasm: Airway
muscles squeeze too
much
• Asthma episodes are
reversible
• Parent/Patient
message:
• Wants an explanation
that takes away the
mystery about asthma,
so can “see” what is
going on in the lungs
• Wants to be reassured
that asthma is
manageable and can
get better
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Communication Tips for
Explaining Asthma
• Make it simple and use pictures of airways
• Use the “fist” example, asking parent/patient
to do it with you.
• Convey the dynamic of open/shut airways
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Asthma Can Be Managed:
Key Message
• With proper therapy, the child can be
symptom free
• Goal is to use as little medicine as possible,
increasing on an as-needed basis.
• Long-term goal of reducing or even stopping
regular medication
• Emphasis on as little as possible addresses
parents’ fears of overmedication and
“dependence”
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Explain About Quick-Relief
Medications
• Provider message:
– Quick- relief medications
act fast, so that
breathing is easy again
within minutes
– Quick-relief medications
relax the muscles after
they have tightened
during an attack
– Parents are in charge of
helping their children
breathe through the
quick-relief medications
• Parent Message:
• Know that medicines
will open up lungs and
child won’t suffocate
• Know that reaction is
not instant; may take a
few minutes
• Quick relief medicines
are parents’ ticket to
helping child breathe
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Communication Tip for QuickRelief Medications
• Use a physical example: Unclamp fist to show
how medicines work
• Ask parent about fears about child during an
asthma episode
• Discuss concerns parents may have about
medications
– Jitteriness; anxiety
– Other side effects parents may fear (“dependence”)
• Be accurate about risks but reinforce message
that medicines work!
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Explaining about Controller
Medications
• Provider Message:
• Anti-inflammatory
medicines don’t relieve
symptoms
• Do reduce inflammation
and prevent frequent or
severe episodes
• Needed if asthma
symptoms more than
every 2 months
• Effective only if taken
regularly
• Parent Message:
• Anti-inflammatory meds
are like a flu shot, to
help keep away the
“bad” asthma episodes
• Anti-inflammatory
medicines are like
vitamins; they need to
be taken all the time,
even if not sick
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Communication Tips about Controller
Medicines
• Explain the different types of controllers
(parents want to know the names), and why
more than one may be used
• Convey clearly information about any risks or
side effects
• Discuss fears about medication “dependence”
– Low Doses of Inhaled Corticosteroids do not cause
side effects
– Not the same as the body-building steroids
• Emphasize safety of the medications when
used as prescribed on the plan.
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Talking about Alternative Asthma
Treatments
• Provider Message:
• Asthma medications
work and are safe when
used as prescribed.
• Traditional teas and
herbal remedies can
also be used, but not
instead of medications.
• Work out how the two
can be paired, if parents
wish.
• Parent Message:
• Needs to hear that it
is OK to use
traditional remedies
with medications
• Sense of respect for
own traditions when
provider brings up
alternative therapies
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Asthma Action Plan as a Tool
• Asthma Action Plan is a problem solving tool.
• Plan is based on information from both parent
and provider
– Parent/patient: Symptoms in each zone; triggers
– Provider: Medications and “action steps”
• Parent/patient involvement in developing the plan
will increase chance that is used appropriately.
– Makes sure “fits” for the family
– “What if” helps the family see how it can help solve
asthma management problems
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Developing the Asthma Action Plan
• Begin filling out the asthma action plan as you
talk about each medication, so that you build
the plan as you go. (simpler, easier for parents
to stay with you)
• Give the daily dose level for the child
• Outline how to change the quick relief doses if
the child becomes symptomatic
– Use the stop light image to categorize normal
(green), caution (yellow), and danger (red)
• Give the limits for quick relief medications
– maximum sets of 4 puffs per day
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Example of An Asthma Action Plan
Asthma
Zone
Symptoms
Medications How much?
What else?
GO
Good breathing
Sleep at night
Peakflow>80%
Quick Relief 2 puffs X 2
/day
Controller
2 puffs X2 /
day
Child can
play & go to
school
Caution
Cough
Wheeze
Peak flow
<80%
Quick Relief 4 puffs now
& 4Xday
Controller
4 puffs
2X/day
Call doctor;
watch child
See doctor
to change
meds
Danger
Asthma worse
fast;
Meds don’t
work
Peakflow<50%
Quick Relief 4 puffs right
now
Controller
4 puffs bid
Urgent call
to doctor;
go to ED if
can’t reach
doctor
Communication Tips for the
Asthma Action Plan
• Color Code the Explanation
• Show what the different colors mean in terms
of the child’s symptoms
• Explain how to use the plan to adjust
medications
• Give parent confidence to read child’s
symptoms
• Make sure parent knows you can be called if
parent has questions, and must be called if
danger zone.
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Review Plan with Parents/Patients
• The plan is only a piece of paper if you don’t
help the parent use it.
• Underscore that the plan is tailored especially
for their child
• Give example of how to use the plan if child
gets a cold or flu
– Shift preventively into Yellow Zone medications
• Reassure parent that you are always there if
not sure what to do.
• Make sure parent knows how to reach you
24 hours a day.
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Practice Using the Plan
• Make sure parent understands how to “read”
child’s breathing in each zone
• Encourage parent to talk often to child about
their breathing
• Go over what to do if breathing changes
• Ask parent to identify when/how meds will be
given in daily routine
• Ask the parent to do a “mock” trial with a
nurse on changing symptoms
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Asthma Action Plans Need to be
Updated
• Follow-up call to parents w/in 1 month
• Ask parents to come in to review plan
regularly to make sure it is still right
• Ask parents to come in for a medication
change if symptoms persist or worsen.
– Stays in “yellow” zone too long
– Doesn’t sleep through night
– Asthma triggered by play
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Explaining How to Take Medicines
• Provider Message:
• Demonstrate how to
use inhaler and
spacer
• Show how to use
peak flow meter
• Give step-by-step
instructions
• Parents Message:
• Need to feel
comfortable with the
“technology”
• Need to know
how/where to get
spacers, etc.
• What to do if run
out of medicine
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Communication Tips on Medication Use
• Ask parent to demonstrate technique in
the office
• Reassure parent and child that spacer is
meant to allow slow, easy intake of
medication
• Reassure parent about using alternative
treatments with medications (teas,
herbal remedies)
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Explaining Peak Flow Meters
• Provider Message:
• Peak flow meter helps
identify breathing
changes before an
episode occurs
• Useful only if breathing
is monitored regularly
• Not used in children
under age 6
• Parent Message:
• Peak flow meter
signals what’s going
on inside the lungs
before it gets bad
• Peak flow meter use
needs to be a habit
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Communication Tips for Peak
Flow Meters
• Use a small, easy to use meter
• Give steps to establish child’s personal best
– Best of three puffs every morning for 2-3
weeks when asthma is under control
• Show how to mark gauge with child’s zones
(personal best, caution, danger)
• Help parent establish a routine for peak flow
measurements each morning
• Remind the parent to adjust medications if peak
flow reading is <80% of normal/personal best.
Asthma Basics for Children, Mailman School of Public Health, Columbia University
What about Triggers?
• Provider Message:
• Some children’s
asthma is
“triggered” by
allergies, irritants, or
exercise
• If there are triggers,
steps can be done
to reduce the child’s
exposure to them
• Parent Message:
• Asthma management is
not just medicines.
Need to control triggers.
• Many triggers are very
common in our homes,
and having a “trigger”
like dust in the home
doesn’t mean parent is
bad housekeeper.
• Can do something
about some but not all
triggers.
Communication Tips about Triggers
• Ask parents about what triggers asthma
• Give a “trigger checklist” parents can use to identify
possible triggers in their home
• Recommend skin testing to determine specific
allergens (dust, cockroach, pet dander, mold…), and
follow with de-sensitization as needed
• Make recommendations for steps parents can take to
control triggers
– Use of quick-relief medicines before exposure or
exercise
– Cleaning/control tips
– Smoking cessation if there is a smoker in home
– Who to contact for help with triggers
Reaching out for Support: Early
Childhood Centers and Schools
• Goal: Reduce asthma-related absences to
only if very bad or fever/sore throat
• Steps towards a partnership with schools:
– Inform center/school about child’s asthma
– Center/school should have a plan for what to do if
child has asthma episode
– Agreements/plans for medications as needed at
school
– Trigger identification and removal
Asthma Basics for Children, Mailman School of Public Health, Columbia University
An Example: The ABC Asthma Solutions
Program with Early Childhood Educators
• Complementary “Asthma Solutions Handbooks”
for early childhood educators and parents
• 3 part training series for early childhood educators
• Asthma screening program through the early
childhood centers
• 2 part training program for parents
• Follow-up by the center’s staff
• Integration of asthma units and improved
management into the child care program
• It Takes a Village approach to environmental
triggers
The Experience of 14 Centers:
One in Five had Asthma
Status of Children Screened
(N=479)
20%
39%
Children with asthma
symptoms but no
diagnosis
Children with symptoms
and diagnosis
41%
Children with no
symptoms, no diagnosis
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Need for Enhanced Screening of
Preschoolers
• Clear need for early screening programs: 20%
of the children in the day care centers already
had a diagnosis, and another 39% had asthma
symptoms.
• Screen children whose parents have/had
asthma: Children with asthma symptoms were
over 2 times more likely to have a parent with
asthma.
• State-of-the-art now includes recommendations
on diagnosis and management of asthma
among pre-schoolers.
•
Source: Special Supplement on Asthma among Preschoolers, Pediatrics,
Oct. 2001.
Diagnosed Children with Asthma
Action Plans
Asthma Diagnosis and Action Plans
(N=96)
Children with asthma
diagnosis with an action
plan
43%
57%
Children with asthma
diagnosis with no action
plan
Asthma Basics for Children, Mailman School of Public Health, Columbia University
The Need to Improve Asthma
Management
• One-fourth (26%) of symptomatic children had been to
the ER for asthma in the past year
• Only 13% of diagnosed symptomatic diagnosed children
had been to a doctor about asthma in the past year.
• One-third (37%) of the symptomatic, undiagnosed
children had seen a doctor but not been diagnosed.
• Asthma symptoms are keeping children from school, at a
cost to themselves and their parents, with 2-3 times more
absences than among non-symptomatic children.
• Most (57%) parents of diagnosed children do not have an
asthma action plan.
Asthma Basics for Children, Mailman School of Public Health, Columbia University
Need for Better Links to Providers
• Providers need to be proactive about
diagnosing asthma, even among young
children
• Early Childhood Centers and parents seek
providers who will be partners in asthma
management
• Proactive providers can help ensure regular
asthma check-ups, appropriate medications
guided by an asthma action plan, and
reduced school absences.
Asthma Basics for Children, Mailman School of Public Health, Columbia University