Cystic Fibrosis Action Plan Name: ________________________________ Today’s date: __________ Seen today by:________________________ Age: _______ Genotype:______________________________ Registry: Yes / No Date of Last visit: ______________ Pulmonary Health
Nutrition
FEV1 Today = _____% Best FEV1 this year =_____%
Daily Respiratory Therapy
Medication
Dose
Freq / Day
Albuterol/ Xopenex
Hypertonic Saline 7%
Pulmozyme
Airway Clearance
Hand CPT / Vest
Aerobika / PEP
IPV Machine
Exercise
Inhaled Antibiotic
TOBI / Bethkis
TOBI Podhaler
Cayston
Colistin
Inhaled Steroids
Pulmicort
Flovent / QVAR
Combination Inhaler
Advair / Symbicort
Dulera
Allergy Medications
___Puffs/ vials
1 vial
1 vial
Yes
No
_____min
_____min
_____min
_____min
Yes
No
1 vial
4 capsules
1 vial
1 vial
Yes
No
1 vial
2 puffs w/spacer
Yes
No
2 puffs w/spacer
2 puffs w/spacer
Yes
No
1 2 3 4
1 2
1 2
Singulair
Claritin /Zyrtec /Allegra
Nasal Spray:
____mg
_____mg
_____sprays
1
1 2
1 2
1
1
1
1
2
2
2
2
3
3
3
3
4
4
4
4
2
2
3
2
1 2
1 2
1 2
1 2
Lab Work / X-Ray
Date of your Last sputum / throat culture: ____/____ Results: ___________________________ _____________________________________________ Chest X-Ray - Last Done: ____/____ Annual Labs -­‐ Last done: ____/____ CF culture history: _____________________________ ____________________________________________ ____________________________________________ Past medical history: ___________________________ _____________________________________________ _____________________________________________ _____________________________________________ Previous Weight = _________ lb. (___/___/___)
Today’s Weight = ________ lb. ______%
Today’s Height = ________ in ______%
Your BMI % _______ (ideal is >50th %)
Goal weight is ________ lb.
Nutrition Classification:
Good Concerning At Risk Urgent Need
th
th
th
th
BMI: (>50 %) (25-50 %) (10-25 %) (<10 %)
Enzyme Name: ________________________________
• Take _______ enzyme capsules with each meal
• Take _______ enzyme capsules with each snack
• Take _______ enzyme capsules with feeds
Max _________ enzyme capsules in 24 hours
q G-Tube Status Stomach Acid medication (helps your enzymes work
better):
_____________________________________________
Take the following Vitamins:
_____________________________________________
_____________________________________________
Take the following calorie supplement:
_____________________________________________
_____________________________________________
Last Vitamin levels done: _____/_____
Bone Density Scan: _____/_____ (due by age 18 years)
Bowel Regimen:
__________________________________________________
Cystic Fibrosis Related Diabetes
Screening for CFRD is done annually starting at 10 years of
age by doing an Oral Glucose Tolerance Test (OGTT).
Date of last OGTT: _____/_____
Results: Normal - Impaired Glucose Tolerance - CFRD
Referral:
Education for glucose monitoring
Appointment with CF Endocrinologist
Cystic Fibrosis Action Plan Name: ________________________________ Today’s date: __________ Seen today by:________________________ Patient will need the following:
Changes made today:
Needs to see / Date of Last Assessment q Dietitian _____________ q Social work _____________ q Child Life _____________ q Psychologist _____________ q GI/Sathe _____________ q Endo _____________ q ENT _____________ None
Prescriptions sent to _______________________
Important Contact information:
Office Hours: M-F 8:00am-4:30pm. Call 214-4562361
All calls left before 4pm will be returned the same
business day. Allow 7 days for prescription refills to
process.
After hour emergencies: Call 214-456-7000 & ask
for the CF Pediatric doctor on call. Follow Up: __________________________ You can e-­‐mail us directly at [email protected] Or you can send us a message through MyChart
Your child may be eligible to participate in clinical studies.
To investigate this possibility, you may go to the following
website: http://www.clinicaltrials.gov. Complete a search
for Dallas AND cystic fibrosis NOT cancer. Please call
Clinical Research Coordinators with questions (214-6482817).
Please call our office 4-5 days after your visit to know today’s culture results. Please note: AFB sputum
cultures can take up to 6 weeks for final results
Illness Plan
If you have a change in sputum, cough, appetite, or
have increased shortness of breath, call our office
at 214-456-2361, & ask for the CF Nurse.
For wheezing, shortness of breath, increased
cough or congestion:
1. Give Albuterol or Xopenex – 1 vial every 2-4
hours as needed.
2. Increase your Airway clearance to 3-4x per
day.
3. Please call the CF Nurses within 48-72
hours if symptoms do not improve. 214-4562361
4. If child is in distress, call 911 or go straight
to the ER and call the CF nurses to inform
them of the situation.
Stopping the Spread of Germs:
-­‐
-­‐
-­‐
-­‐
-­‐
-­‐
-­‐
Avoid contact with sick people
Wash your hands often.
Stay at least 3 ft away from people with CF
Get a flu shot every fall, this includes everyone in
the family!
Disinfect your nebulizer cups every day!
Use hand sanitizer often, especially while in clinic
or at the hospital.
Wear a mask while in the clinic or in the hospital or
when people around you are sick.
Family Survey regarding AVS: 1. I always receive an After Visit Summary before I leave my child’s appointment: ☐ Yes ☐ No 2. The After Visit Summary is explained to be before I leave my child’s appointment: ☐ Yes ☐ No 3. I look at the After Visit Summary after my child’s appointment: ☐ Yes ☐ No 4. I keep and use the After Visit Summary after my child’s appointment to care for my child: ☐ Yes ☐ No 5. I use MyChart to look at After Visit Summary (or Care Plan) after my child’s appointment. ☐ Yes ☐ No 6. I find the After Visit Summary confusing and not helpful in the care of my child: ☐ Yes ☐ No Comments:_________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ 7. I find the After Visit Summary informative, easy to understand and helpful in the care of my child: ☐ Yes ☐ No Comments:__________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ 8. What information would be useful to have on your After Visit Summary to aid in the care of your child after you leave clinic: _____________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ Cystic Fibrosis Patient Handoff Form Name: ________________________________________ DOB: ___________ Age at dx: _________ Parents/Caregiver Name(s): _________________________________________ State of Birth: _______ Genotype: ______________________________________ Sweat Test results: _________________ Current Weight ____________ BMI ____________ Frequency of Clinic Visits _____________________ Complications at birth: _________________________________________________________________ Current health status (MD): ☐ Mild Disease ☐ Moderate Disease ☐ Severe Disease Co-­‐morbid Conditions: ☐ CFRD ☐ Chronic Sinus Disease ☐ Liver Disease ☐ Other _______________ Baseline Spirometry(RT; %/L): ______________ Last Spirometry _______ (RT; %/L): ______________ Sputum Cultures (RT): ☐ Aspergillus ☐ MRSA ☐ MSSA ☐ b.Cepacia (type__________________) ☐ Psuedomonas ☐ Stenotrophomonas ☐ OSSA ☐ Other ___________________ Does the patient routinely do home IV therapy (MD)? ☐ Yes ☐ No Is IR required for PICC placement (MD)? ☐ Yes ☐ No _______________________________ Does this patient require sedation (MD)? ☐ Yes ☐ No ______________________________ Are there complications with placement (MD)? ☐ Yes ☐No _________________________ Does this patient have a port (MD/RN)? ☐ Yes Size:____________ Type: ________________________ ☐ No Date placed: _____________ Complications:__________________________________________________________________ Current home care company (RN): ________________________________________________________ Current pharmacy information (RN): ______________________________________________________ Airway Clearance (RT): ☐ Flutter ☐ PEP ☐ Vest ☐ IPV ☐ Manual Does the patient have a g-­‐tube (MD/RD)? ☐ Yes ☐ No Date placed: ____________________ Type: _______________ Size: ______ Does the patient take nutrition supplements (RD)? ☐ Other ___________ ☐ Yes ☐ No If so, what kind (RD)? ☐ Scandishake ☐ Liquigen ☐ Ensure Clear ☐ Duocal ☐ Nutren 2.0 ☐ Ensure plus/Boost plus ☐Pedisure/Pediasure Peptide Does this patient have additional durable medical equipment(RN)? ☐ Bi-­‐pap ☐ Oxygen ☐ Other ______________ ☐ Yes ☐ Other ____________________________ Children’s Medical Center/UT Southwestern Cystic Fibrosis Care & Teaching Center V4. 6/30/14 ☐ No Does this patient see additional subspecialty service (please indicate; MD/RN)? ☐ Yes ☐ GI ☐ Endocrine ☐ ENT ☐ Renal ☐ No ☐ Other _______________________ Current living situation (SW/Psy): ________________________________________________________ Is the patient in school (SW/Psy)? ☐ Yes ☐ No Where? ______________________________ Is the patient working (SW/Psy)? ☐ Yes ☐ No Where? ______________________________ Most recent insurance coverage (SW): ______________________________ Have advance directives been completed (SW)? ☐ Yes ☐ No Has this patient signed a release of information for an adult provider (SW)? ☐ Yes Does this patient take psychotropic medication (Psy)? ☐ Yes ☐ No ☐ No Name of medication(s)(Psy/RN): __________________________________________________ Prescribing physician (Psy/RN): ____________________________________________________ Most recent results: OGTT (RN): fasting: __________ 2hr:_____________ DEXA (RN): Date completed: ____________ ☐ Normal ☐ Abnormal Date completed: ____________ ☐ Normal ☐ Abnormal Date completed: ____________ Vitamin Levels (RN/RD): ☐ Normal ☐ Abnormal Date completed: ____________ Annual Labs (RN): Fecal Elastase: Result_________ ☐ Normal ☐ Abnormal Date completed: ____________ Files to be attached (RN): ☒ Report of annual labs with vitamin levels ☐ Most recent CXR (Date: _______) ☐ Most recent CT scan (Date: _______) ☐N/A ☐ Most recent spirometry results ☐ Most recent clinic note (Date: _______) ☐ Most recent subspecialty notes (Date: _______) ☐N/A ☐ Signed release of information (if needed). ☐ Last PFT report (with loop) ☐ PFT trend flowsheet ☐ Microbiology spreadsheet report ☐ Sleep study report (if applicable) Children’s Medical Center/UT Southwestern Cystic Fibrosis Care & Teaching Center V4. 6/30/14 Patient Satisfaction Survey: Transition and Transfer to Adult Care 1. I feel that I was provided enough information about transitioning to an adult clinic in the year leading up to my transfer of care. ☐ Strongly Agree ☐ Agree ☐ Neutral ☐ Disagree ☐ Strongly Disagree 2. I feel I was given the opportunity to ask questions about transitioning to an adult clinic. ☐ Strongly Agree ☐ Agree ☐ Neutral ☐ Disagree ☐ Strongly Disagree 3. I am satisfied with the care I received in the pediatric clinic. ☐ Strongly Agree ☐ Agree ☐ Neutral ☐ Disagree ☐ Strongly Disagree 4. I was given the chance to discuss when during the year transfer to adult services would occur. ☐ Strongly Agree ☐ Agree ☐ Neutral ☐ Disagree ☐ Strongly Disagree 5. Staff from the pediatric clinic offered to or did help me call the adult clinic to schedule my first adult clinic visit. ☐ Yes ☐ No 6. I knew who/where to call for CF related concerns between my last pediatric appointment and my first adult appointment. ☐ Strongly Agree ☐ Agree ☐ Neutral ☐ Disagree ☐ Strongly Disagree 7. I am satisfied with the care I have received in the adult clinic. ☐ Strongly Agree ☐ Agree ☐ Neutral ☐ Disagree ☐ Strongly Disagree 8. Transition and transfer to the adult clinic met or exceeded my expectations. ☐ Strongly Agree ☐ Agree ☐ Neutral ☐ Disagree ☐ Strongly Disagree 9. I feel like my adult team was well-­‐informed about my medical history from my pediatric team. ☐ Strongly Agree ☐ Agree ☐ Neutral ☐ Disagree ☐ Strongly Disagree 10. I was offered a tour of the adult facilities prior to my first adult clinic visit. ☐ Yes ☐ No ☐ No 11. I know how to contact the adult clinic for follow up. ☐ Yes Additional comments or concerns: __________________________________________________ _______________________________________________________________________________
_______________________________________________________________________________
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