CFF-CF Adult Knowledge Assessment/ Adherence Risk Assessment
1. Beliefs, Values, Issues, and Adherence
This first series of questions may help us learn about concerns our patients with CF share, your beliefs about CF and
how you take care of yourself. The questions at the end of this section are open-ended so you can freely type or write-in
your response. You will then be guided to further sections. It may take you about 20 to 30 minutes to complete this
entire assessment. Thank you
1. How often do you have the following concerns or problems?
Never
Rarely
Sometimes
Most of the time
All of the time
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Trouble with family
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Insurance issues, such as
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Depression
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Anxiety
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Difficulty asking for help
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Time management
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Little support at work
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Little support at home
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Problems with finances or
paying for medicines
Transportation to and from
clinic
Limited support of family
and friends
large copays
No insurance or not enough
health insurance
Not able to come to clinic
due to finances
difficulties
2. Tell us what you believe, do and feel.
I believe I have control
over my lung health
I believe I have control
over my nutrition
I believe it is important to
stick with my treatments
I believe my weight is a
good weight for me
I believe vitamins are
important to my health
I have a regular schedule
for doing my therapies
I get prescriptions filled and
take newly ordered
Never
Rarely
Sometimes
Most of the time
All the time
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medicines
I finish a 2 week course of
antibiotics in 2 weeks
Page 1
CFF-CF Adult Knowledge Assessment/ Adherence Risk Assessment
3. Keeping up with your CF treatment schedules can be difficult.
Tell us about how often you MISS or SKIP the following CF treatments.
I SKIP or MISS the following prescribed CF treatments:
(check N/A if you are not prescribed this therapy)
All the time
Nebulized broncholdilator
About once
per day
About once
every other
day
3 or more
Less than 2
Less than 1
times/week
times/week
time/week
Never
N/A
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Hypertonic Saline
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D-Nase (Pulmozyme)
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Nebulized antibiotics (such
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Vitamins
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Antibiotics taken by mouth
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IV antibiotics
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High-calorie Diet
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Cleaning/disinfecting
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(such as albuterol or
xopenex)
as Tobi, Colistin, Cayston)
Airway clearance (such as
Vest, Flutter, Accapela,
CPT)
Inhaled steroids (such as
Flovent, fluticasone,
Pulmicort, and Advair)
Pancreatic Enzyme
Replacement Therapy
(PERT)
nebulizer equipment
4. The most important thing I do to manage my CF is:
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5. The #1 reason I have difficulty sticking to my CF treatment plan is:
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6. Sometimes I don't do my treatments just because:
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Page 2
CFF-CF Adult Knowledge Assessment/ Adherence Risk Assessment
7. The most difficult treatment I have to take is:
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8. The easiest treatment for me to take is:
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9. What makes it harder to do your treatments?
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10. One thing that would help me to better stick to my CF treatment plan would be:
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11. Your Age
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18-24
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25-29
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30-39
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40-49
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50+
12. My Body Mass Index (BMI)
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Greater than 23
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20-22
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Less than 20
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I don't know
13. My FEV1 percent predicted
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Greater than 75%
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25-75%
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Less than 25%
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I don't know
14. My Initials (optional)
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CFF-CF Adult Knowledge Assessment/ Adherence Risk Assessment
2. General CF Health
The following questions ask about your CF GENERAL HEALTH. Please select the best answer(s). Some questions ask
for ONE BEST ANSWER and some questions ask you to CHECK ALL THAT APPLY (more than one answer may be
chosen).
1. The basic problem in the body that causes the symptoms of CF is:
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The body has severe allergies to food and particles in the air.
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The body has a weak immune system.
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The cells in the body cannot properly regulate salt.
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Several organs in the body are underdeveloped.
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I'm not sure.
2. If a carrier and a person with CF have a child, what is the chance that the child will
have CF?
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25%
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50%
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75%
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100%
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I'm not sure
3. The following statements are TRUE about pancreatic insufficiency in CF. (check all
that apply)
c
d
e
f
g
Pancreatic digestive enzymes can't get to the intestines as they should.
c
d
e
f
g
Not enough digestive enzymes are produced.
c
d
e
f
g
If a person with CF is pancreatic sufficient at birth, pancreatic insufficiency will never develop.
c
d
e
f
g
I'm not sure.
4. As persons with CF get older, there is an increased chance of developing diabetes
and needing insulin shots.
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True
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False
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I'm not sure
Page 4
CFF-CF Adult Knowledge Assessment/ Adherence Risk Assessment
5. The majority (97-98%) of men with CF are infertile (unable to have a baby through
intercourse). Which of the following statements are TRUE about sterility/sexuality in
most men with CF? (check all that apply)
c
d
e
f
g
No sperm is present in semen.
c
d
e
f
g
Men with CF have normal external reproductive organs.
c
d
e
f
g
Men with CF have normal sexual drive and performance.
c
d
e
f
g
There is no need to protect self from sexually transmitted diseases.
c
d
e
f
g
I'm not sure.
6. Exercise, especially in the summer, can cause a decrease in the salt and water in your
body. What should you do? (check all that apply)
c
d
e
f
g
Eat more Salt.
c
d
e
f
g
Drink more water.
c
d
e
f
g
I'm not sure.
7. Your liver enzymes are checked by taking a blood sample on a yearly basis to watch
for liver problems. Liver problems in CF may develop because thick secretions may
block the ducts that drain bile secretions from the liver.
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True
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False
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I'm not sure
8. Some people with CF develop kidney disease. What is the most common reason for
this?
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Thick, sticky mucus in the kidneys causes damage.
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Some medications prescribed to treat CF can damage the kidneys.
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Excess salt in the body can damage the kidneys.
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Infections in the lungs can spread to the kidneys and damage them.
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I'm not sure.
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CFF-CF Adult Knowledge Assessment/ Adherence Risk Assessment
9. If someone with CF develops sadness, feelings of anxiety, or hopelessness that does
not go away in a few weeks, he/she should:
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Deal with it; all people have emotional problems.
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Discuss these feelings with the CF team.
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Keep it to him/herself.
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I'm not sure.
10. Which of the following statements are TRUE about drinking alcohol? (check all that
apply)
c
d
e
f
g
Alcohol may decrease the functioning of the respiratory system, including cough.
c
d
e
f
g
Alcohol may react with certain antibiotics and other medicines.
c
d
e
f
g
Alcohol is a good way to hydrate your body and get fluids.
c
d
e
f
g
Alcohol can cause liver damage.
c
d
e
f
g
I'm not sure.
3. CF Lung Health
The next 9 questions ask about CF LUNG HEALTH. Please SELECT the best answer(s). Some questions require ONE
BEST ANSWER and some questions ask you to CHECK ALL THAT APPLY(more than one answer may be chosen).
1. How does CF affect the lungs? (check all that apply)
c
d
e
f
g
Abnormally thick mucus traps bacteria resulting in infection.
c
d
e
f
g
Repeated infections cause further inflammation.
c
d
e
f
g
Lung function decreases over time.
c
d
e
f
g
I'm not sure.
2. Signs of a pulmonary exacerbation (a worsening in your symptoms or lung function)
MAY include: (check all that apply)
c
d
e
f
g
Change in your mucus, cough or energy level
c
d
e
f
g
A decrease in appetite or weight
c
d
e
f
g
Shortness of breath, wheezing, increased sputum
c
d
e
f
g
Fever
c
d
e
f
g
I'm not sure.
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CFF-CF Adult Knowledge Assessment/ Adherence Risk Assessment
3. If you cough up blood on a Friday night, you should:
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Do your aerosols and airway clearance.
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Call the CF nurse call-line on Monday morning.
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n
Call the CF doctor on-call.
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Do Nothing.
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n
I'm not sure.
4. The CF bacteria in your lungs will always be killed with antibiotics.
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True
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False
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I'm not sure.
5. The key to slowing and preventing lung damage in CF is to be aware of and treat lung
infections early.
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True
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False
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I'm not sure.
6. Which of the following are ways to decrease the number of lung infections you get?
(check all that apply)
c
d
e
f
g
Stay away from people who are sick.
c
d
e
f
g
Keep up with your airway clearance.
c
d
e
f
g
Keep up with your maintenance antibiotics.
c
d
e
f
g
Wash your hands.
c
d
e
f
g
Get a flu shot.I'm not sure.
7. To find out if you have a lung infection, your CF team MAY: (check all that apply)
c
d
e
f
g
Do a PFT (pulmonary function test)
c
d
e
f
g
Listen to your lungs
c
d
e
f
g
Ask questions about changes in your health
c
d
e
f
g
Get a sputum sample
c
d
e
f
g
I'm not sure.
Page 7
CFF-CF Adult Knowledge Assessment/ Adherence Risk Assessment
8. To keep from getting new CF bacteria in your lungs, you should: (check all that apply)
c
d
e
f
g
Avoid close contact with other people with CF.
c
d
e
f
g
Clean your hands with hand sanitizer before you leave CF clinic.
c
d
e
f
g
Wash your hands often.
c
d
e
f
g
Wear a mask in the common areas when you come to CF clinic.
c
d
e
f
g
I'm not sure.
9. The following statements are TRUE about maintaining your lung health. (check all that
apply)
c
d
e
f
g
Clinic visits for monitoring your health status are recommended at least every 3 months.
c
d
e
f
g
When you get the right calories and nutrients your body can better fight infection and recover from exacerbations.
c
d
e
f
g
Clearing the airways of mucus is necessary by doing at least one type of airway clearance therapy.
c
d
e
f
g
You may need more frequent clinic visits when you have had a pulmonary exacerbation or are not maintaining a good weight.
c
d
e
f
g
I'm not sure.
4. CF Nutrition Health
The next 13 questions ask about your CF NUTRITION HEALTH. Please select the best answer(s). Some questions
require ONE BEST ANSWER and others ask you to CHECK ALL THAT APPLY (more than one answer may be chosen).
1. If you have abdominal cramps with gas and no bowel movement for 24 hours. You
should:
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Stop enzymes.
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n
Use stool softener or bowel stimulant, such as Miralax if previously directed and if not effective, call your CF Center.
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m
n
Stop eating.
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n
Stop taking your antacid.
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m
n
I'm not sure.
2. If you notice that you are going to the bathroom more often and have stomach aches
nearly every day:
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You may need to eat less food.
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m
n
You should discuss this with the CF team, because your enzyme dose may need adjusted.
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m
n
I'm not sure.
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CFF-CF Adult Knowledge Assessment/ Adherence Risk Assessment
3. The foods that contain the most calories come from:
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Fats
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Carbohydrates
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n
Proteins
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I'm not sure.
4. Beans, meats, and eggs are good sources of:
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Carbohydrates
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Protein
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Fat
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I'm not sure.
5. Individuals with CF should eat 3 meals and 2-3 snacks per day, because: (check all
that apply)
c
d
e
f
g
Some energy is lost through problems absorbing foods.
c
d
e
f
g
They burn calories faster.
c
d
e
f
g
They have to fight off infections.
c
d
e
f
g
Their appetites are naturally bigger.
c
d
e
f
g
I'm not sure.
6. People with CF take Vitamins A, D, E, and K because:
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These vitamins need extra water to be absorbed.
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These vitamins are not found in foods that people normally eat.
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n
These vitamins are poorly absorbed due to pancreatic insufficiency.
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n
I'm not sure.
7. One way to add calories to scrambled eggs is:
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m
n
Mix them with 2% milk instead of whole milk.
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m
n
Add salt and pepper.
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m
n
Add grated cheese.
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m
n
Cook them longer.
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n
I'm not sure.
Page 9
CFF-CF Adult Knowledge Assessment/ Adherence Risk Assessment
8. Your CF team monitors your "Goal Weight" because lung function often declines in
people with CF when their weight declines.
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True
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n
False
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I'm not sure.
9. A recommended high calorie beverage that can complement your diet includes:
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n
Soda/pop
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n
Kool-Aid
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n
Milk
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m
n
Beer
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n
Sports Drinks
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n
I'm not sure.
10. Pancreatic enzymes (PERT) should be kept in a cool, dark place.
j
k
l
m
n
True
j
k
l
m
n
False
j
k
l
m
n
I'm not sure.
11. It is best to take enzymes:
j
k
l
m
n
As soon as you remember
j
k
l
m
n
At the beginning of a snack or meal
j
k
l
m
n
Once a day
j
k
l
m
n
After eating
j
k
l
m
n
I'm not sure.
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CFF-CF Adult Knowledge Assessment/ Adherence Risk Assessment
12. Which of the following statements are TRUE about bone health in CF? (check all that
apply)
c
d
e
f
g
Vitamin D helps the body absorb calcium.
c
d
e
f
g
Low weight and poor nutrition can lead to weak bones.
c
d
e
f
g
Calcium, zinc, magnesium, protein and Vitamins D, K, and A are needed to build and keep strong bones.
c
d
e
f
g
Early detection of decreasing bone health with DEXA scan AND treatment may prevent osteoporosis and fractured bones.
c
d
e
f
g
I'm not sure.
13. Which of the following foods may require more enzymes to help with digestion and
absorption? (check one)
j
k
l
m
n
Grilled chicken sandwich
j
k
l
m
n
Turkey, baked potato and vegetables
j
k
l
m
n
Pan Pizza
j
k
l
m
n
Cereal with whole milk
j
k
l
m
n
I'm not sure.
5. CF Treatments
This last series of 12 questions will ask you about some of the TREATMENTS commonly recommended for people with
CF. Please SELECT the best answer(s). Some questions require ONE BEST ANSWER and others ask you to CHECK
ALL THAT APPLY (more than one answer may be chosen).
1. What statements are TRUE about airway clearance? (check all that apply)
c
d
e
f
g
Coughing is part of airway clearance.
c
d
e
f
g
It should be done only when you feel sick.
c
d
e
f
g
It makes the lungs produce more mucus.
c
d
e
f
g
It shakes loose the mucus already in your lungs.
c
d
e
f
g
I'm not sure.
2. Exercise replaces regular airway clearance.
j
k
l
m
n
True
j
k
l
m
n
False
j
k
l
m
n
I'm not sure.
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CFF-CF Adult Knowledge Assessment/ Adherence Risk Assessment
3. According to the CF Foundation, the recommended order to take inhaled medications
and therapies is:
j
k
l
m
n
Airway clearance, Inhaled antibiotics, Inhaled bronchodilators,
Medicines that hydrate and thin mucus.
j
k
l
m
n
Inhaled bronchodilators, Medicines that hydrate and thin
j
k
l
m
n
Inhaled antibiotics, Inhaled bronchodilators, Airway clearance,
Medicines that hydrate and thin mucus.
j
k
l
m
n
I'm not sure.
mucus, Airway clearance, Inhaled antibiotics.
4. With CF, coughing:
j
k
l
m
n
Is important to clear mucus from your lungs.
j
k
l
m
n
Gives CF to other people.
j
k
l
m
n
Tires you and you should not do it.
j
k
l
m
n
Can be controlled with cough medicines if it gets worse.
j
k
l
m
n
I'm not sure.
5. What is TRUE about cleaning your nebulizer? (check all that apply)
c
d
e
f
g
It will prevent build up of medication which may make your treatments take longer.
c
d
e
f
g
It will prevent mold/bacterial growth.
c
d
e
f
g
Cleaning of nebulizer equipment is no longer necessary in adulthood because CF bacteria are already in your lungs.
c
d
e
f
g
Nebulizer equipment should be cleaned according to manufacturer instructions and CF Foundation recommendations.
c
d
e
f
g
I'm not sure.
6. Large amounts of undigested food will pass through your digestive system if you
have:
j
k
l
m
n
Too many enzymes.
j
k
l
m
n
Too few enzymes.
j
k
l
m
n
The right amount of enzymes.
j
k
l
m
n
I'm not sure.
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CFF-CF Adult Knowledge Assessment/ Adherence Risk Assessment
7. Pulmonary exacerbations MAY be treated with all of the following EXCEPT:
j
k
l
m
n
Adding or changing antibiotics.
j
k
l
m
n
Increasing the frequency of airway clearance therapies.
j
k
l
m
n
Using bronchodilators to open airways.
j
k
l
m
n
Steroids such as prednisone to decrease inflammation.
j
k
l
m
n
Medicines to stop coughing and dry up mucus.
j
k
l
m
n
Increasing calories and fluid intake.
j
k
l
m
n
Rest.
j
k
l
m
n
I'm not sure.
8. The following statements are true about pancreatic digest enzymes. (check all that
apply)
c
d
e
f
g
Some heavy or very fatty meals may require extra enzymes to digest the extra fat and protein.
c
d
e
f
g
It is important that the enzymes are in your small intestines when the food arrives.
c
d
e
f
g
Enzymes can be crushed or chewed.
c
d
e
f
g
I'm not sure.
9. It is OK to skip your everyday medicines when you are feeling good.
j
k
l
m
n
True
j
k
l
m
n
False
j
k
l
m
n
I'm not sure.
10. A PFT is important following treatment of an exacerbation to:
j
k
l
m
n
Determine if you have taken your antibiotics as prescribed.
j
k
l
m
n
Determine if your lung function has returned to its baseline/best function.
j
k
l
m
n
Prove to you that you need to do airway clearance.
j
k
l
m
n
I'm not sure.
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CFF-CF Adult Knowledge Assessment/ Adherence Risk Assessment
11. What problems could happen if your body does NOT have enough pancreatic
enzymes? (check all that apply)
c
d
e
f
g
Poor absorption of nutrients
c
d
e
f
g
Weight loss
c
d
e
f
g
More frequent bowel movements/stool
c
d
e
f
g
Cramps, gas, and bloating of the abdomen
c
d
e
f
g
Bowel blockage or DIOS (Distal Intestinal Obstructive Syndrome)
c
d
e
f
g
I'm not sure.
12. If you go to the pharmacy and find that your insurance does NOT pay for a new
medicine, you should:
j
k
l
m
n
Call the nurse call line sometime in the next week or so.
j
k
l
m
n
Wait till your next visit to tell the doctor.
j
k
l
m
n
Figure nothing can be done about it.
j
k
l
m
n
Call the nurse call line the same or next day.
j
k
l
m
n
I'm not sure.
Page 14