Collaborative Care of Pediatric
Pulmonary Patients During
Hospitalization
Combined Sections Meeting 2016
Anaheim, California, February 17 -20, 2016
Texas Children’s Hospital
Eryn Housinger, PT, DPT
Morgan Sullivan, MS, CCLS
Disclosure
Speakers have no disclosures or conflicts of interest
Session Learning Objectives
1. Identify reasons for hospitalization among pediatric
patients with pulmonary disease (including CF).
2. Identify team members involved in establishing plan of
care once admitted.
3. Acknowledge the role of the physical therapist and the
child life specialist within the cohesive interdisciplinary
team in providing the highest possible quality of care.
4. Understand motivational challenges within pediatric
pulmonary population and ways to increase adherence
for treatment completion.
5. Understand ways to improve patient reported quality of
life while admitted for prolonged hospitalizations.
Outline
 Background
 Physical Therapy with a Pulmonary Focus
 Child Life Services
 Interdisciplinary Team
 Super Stepper Program
 Questions
Background
TCH Procedures
 Isolation status
 Contact isolation (mask out of room)
 Droplet isolation (no out of room)
 Airborne isolation (N95 mask and no out of room)
 Reverse isolation (pre/post lung transplant)
 Precautions
 Therapist wearing gown and gloves at minimum
 Patient wears mask outside of room
 Clean everything the patient contacts with wipes before
and after session
National ICP CF guidelines
 Patients should be on contact isolation while admitted
 Patients should not be in common or high traffic areas (unit
playroom, CL activity area)
 Patients should maintain 6 feet or more separation from another
patient with CF
 No special precautions for specific bacteria, all treated equally
Welcome to the 14th floor
 Pulmonary, endocrine, adolescent medicine units
 Open unit, 36 beds, private rooms, caregivers
allowed 24 hours
 Patients generally admitted for 7-14 days
 All on contact isolation (or more intense)
 4-6:1 ratio for nursing
 1 physical therapist, 1 physical therapy assistant for the unit
 1.5 child life specialist and 1 child life activity coordinator
 Pulmonary Patients
 Receive pulmonary rehab during week days up to 5x/week; but not
on weekends
 Encouraged to remain active while admitted
 Many have daily schedules
 Reports of poor adherence to recommendation from family and
staff
Patient Population Considerations
 Isolation status
 Census and staffing
 Other procedures
 Scheduled (team) RT: A,B,C chosen by patient
 Line placement, bronchoscopy, sinus surgery
 Lines
 Central line placement and scheduled IV meds
 nutritional supplementation: NG or G-tube, TPN
 Comorbidities
 CFRD, bone density issues, supplemental oxygen requirements
Team Members
 Pulmonology team (attending, fellow, residents)*
 Social Worker*
 Dietician*
 Pharmacist
 Bedside RN
 CCLS and Child Life Partner
 PT and PTA and Respiratory Therapist
 Psychologist or Psychiatrist
 Respiratory Therapist
*pulmonary specific team
Reasons for Hospitalization
 Pulmonary exacerbation (PFTs, cough, sputum change)
 Decrease weight gain or weight loss
 Planned admit for procedure (sinus surgery, g-tube
placement, central line placement)
 Initiation of bipap or supplemental O2
 Diabetes diagnosis
 Transfer for lung transplant evaluation from outside
facility
 Awaiting lung transplant and too sick to be discharged
Physical Therapy Program
Common Pulmonary Diagnoses
 Cystic Fibrosis
 Pulmonary Hypertension
 Surfactant Deficiency
 Lung Transplant
 Bronchiolitis Obliterans
Cystic Fibrosis
 Poor exercise tolerance
 May observe coughing or difficulty
breathing, indicating need for break
 May have headaches or mild aches
 High heart rate at rest or low Spo2
with activity
Cystic Fibrosis
 Patients with CF may have:
 CF related diabetes (CFRD)
 Ask about blood sugar concerns/habits – did they
bring a snack? Do they commonly have issues?
 Low bone mineral density
 Chart review for previous fractures, long term steroid
use or bone density scans
 Poor posture and breathing mechanics
 Postural assessment scale, assess breathing
mechanics & thoracic/trunk mobility
 Finger and toe clubbing
Pulmonary Hypertension
 PAH








May not have signs at first
Shortness of breath
Easily fatigued
Light headed or syncope
Swelling of legs and ankles
Chest pain
Racing heart
Low SpO2
 Precautions with Exercise
 Monitor heart rate
 Typically < 180 bpm
 Monitor SpO2 at all times
 Typically > 92%
 Stop and rest if any episodes
of chest pain, head ache or
light headedness (dizzy)
Surfactant Deficiency
 More likely a young child or infant
 Likely admitted for transplant evaluation
 Similar to other pre-transplant conditions
 Talk with physician to determine appropriate
value ranges for HR and Spo2.
Lung Transplant Patients
 Pre Transplant
 Likely very poor exercise tolerance (intervals of mod-low intensity exercise
with lots of breaks)
 Poor posture with intense myofascial restrictions and poor work of
breathing
 Possible supplemental O2 dependence via nasal cannula or face mask
 Purpose: get as strong as possible before transplant, begin education for
use after transplant (sternal precautions, what to expect)
Lung Transplant Patients
 Post Transplant
 Sternal precautions x 6-8 wks
 Muscle restrictions in cervical, thoracic and lumbar
2/2 intubation, time in bed post transplant & major
trauma to chest from surgery
 Initially poor exercise tolerance but improved SpO2
and HR compared to pre-transplant
 Purpose: in 3 months return home and be
independent and in better health than pre transplant
Other Pulmonary Conditions
 Bronchiolitis Obliterans
 May be post transplant or have had rehab in the past
 If 2/2 ALL, check for precautions and possible chemo schedule
 May need supplemental O2
 PAVM
 Most common issue is dyspnea with exertion, likely will need
frequent rest breaks
 May have significant cyanosis or clubbing
 Monitor HR and O2 closely during activity, ask physician for
parameters
 ie. current pt is allowed complete activity with Spo2 as low as
50% as this is his current baseline
Physical Therapy Protocol
All patients with Pulmonary Rehab orders receive a PT Evaluation upon admit
Evaluation includes:
6MWT, BOT II Strength assessment, Postural Screen
If patient:
• achieves > = 75% of predicted distance for
age during 6MWT, no decompensations
• Scores at least average on BOT II strength,
no significant issues with component testing
• Minimal postural issues or breathing
difficulties at rest and with activity
If patient:
• Achieves < 75% of predicted distance for age
during 6MWT or has pain, decompensations,
difficulty recovering
• Scores less than average on BOT II strength,
cannot complete a component, or pain
• Moderate or worse postural issues, pain,
instability, scoliosis, mobility concerns
• Difficulty breathing, requires supplemental
oxygen support
Will receive:
• PT 3-5x/week for up to 45 minutes
• Focus on improving and maintaining function,
minimizing deconditioning
• Recommend to walk 1 mile daily
• Customized home program for non-PT days
and for discharge
Will receive:
• PT 5x/week for up to 45 minutes
• Focus on improving mobility, addressing
concerns, decreasing oxygen support,
maximizing functional potential
• Encouraged to walk daily up to 1 mile
• Customized home program for non-PT days
and discharge
Physical Therapy Evaluation
 Chart Review
 PFTs from admission, recent admissions, recent
procedures, screen for CFRD, use of supplemental
O2, bone density concerns, social concerns
 Subjective
 Current level of physical activity, interests/hobbies
 Do they attend school full time?
 Do they attend PE at school and how often?
Physical Therapy Evaluation
 Objective
 Vital signs (VS) at rest, during physical activity, 2
minute post recovery
 Postural assessment
 Observe breathing mechanics, compensations
 Cough technique
 Standard Measures
 6MWT (hopefully 3MST soon if indicated)
 BOT II strength assessment
 CFQ-R with assistance of CCLS
Physical Therapy Evaluation
6MWT
 Completed on pulmonary unit, modified protocol
based on ATS guidelines
 Compared to normal values to get % predicated for
age and gender
 Overall age adjusted 6MWD: 6MWD(meters) = 11.89
x age (y) + 486.1(meters) (p = .000) (1)
(1)Ulrich
et al. BMC Pulmonary Medicine 2013, 13:49
Phsyical Therapy Evaluation
BOT II Strength
 5 components
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Wall sit (up to 60 seconds)
Prone v-up *superman (up to 60 seconds)
# of push ups completed in 30 seconds
# sit ups completed in 30 seconds
Double limb forward jump (distance)
 From combined total score can obtain descriptive
category compared to normal healthy children
 Well above, above, average, below or well below average
 Age equivalent can be calculated
Physical Therapy Evaluation
CFQ-R
 Quality of life assessment, specific to CF
 6-11 yo, interview format
 12-13 yo, self report
 14-adult hood, self report
 6-13 yo, caregiver assessment in addition to pt
 English and Spanish versions available
 Excel scoring system
 Completed by PT or CCLS
Physical Therapy Interventions
 Patients receive PT either daily or 2-3x/week for at least
30 minutes depending on condition at admission and
progress during hospitalization
 Sessions focus on strengthening, postural awareness,
breathing facilitation, and gross motor skills
 Each patient receives a home program to begin while
admitted and progress with program prior to discharge
 May be seen by PT or supervised PTA
Physical Therapy Purposes
 Get Stronger
 Increase Endurance
 Breathe Better
 Increase Chest Mobility
 Have fun!
Physical Therapy Purposes
 Get Stronger
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
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Core strengthening needed to improve posture and breathing
Arm and leg strengthening needed to improve bone density
Increase muscle mass
Remember to stretch
 Increase Endurance
 Achieve optimum pulmonary function and efficiency
 Keep up with peers
 Use it or lose it
Physical Therapy Purposes
 Breathe Better
 Improve diaphragm strength to breathe and cough more
effectively
 Improve respiratory muscle strength and flexibility
 Controlled breathing patterns help maintain appropriate gas
exchange and facilitate calming; pursed lip breathing
 Increase Chest Mobility
 Improve posture for more efficient breathing
 Prevent or improve discomfort associated with respiratory
muscle tightness and decreased rib cage mobility
 Provide lungs adequate space for breathing
Physical Therapy Purposes
 Have Fun!
 In order to stick with it, activities must be fun!
 Organized sports, outdoor games, swimming, biking, dancing
 Exercise is a life-long commit for people with Cystic
Fibrosis
 Start now in order to increase compliance as children
get older
 Encourage activity as patient’s often self-limit
 Coughing is okay when active, play is a breathing
treatment too
 Introduce new activities to avoid boredom
Challenges with Participation
 Isolation status limits venues for participation
 AM PT sessions before 10AM
 Difficulty with schedule
 Meals and supplements, IV meds, RT treatments
 Boredom
 variety of activity necessary, only so many places you
can go within the hospital
 keeping it challenging
 They are sick!
 Teenagers…
CHILD LIFE PROGRAM
What is a Child Life Specialist?
 Child life specialists help decrease anxiety related to
hospitalization and/or diagnosis while promoting positive
coping.
 Normalization, diagnosis teaching, psychological preparation for
medical procedures, distraction, sibling support, bereavement support,
increase compliance with medical treatment
Where do Child Life Specialists work?
 Hospitals
 Inpatient units, outpatient areas, emergency centers, day surgery,
intensive care units
 Outpatient facilities
 Dentist offices, doctor offices, same day surgery, bereavement centers
Child Life Interventions
 Normalization
 age appropriate activities, recognize and celebrate special events
(birthdays, graduation, etc.), play (bedside/group setting), in-hospital
school enrollment, special events
 Diagnosis Teaching
 developmentally appropriate education re: new diagnosis (patient
and/or sibling), medical play
Child Life Interventions
 Psychological Preparation
 developmentally appropriate preparation for medical procedure,
treatment, hospitalization
 sensory words, sequence of events, pictures, medical play
 provide resources to families and siblings (written) to help them
continue to cope upon discharge
 Distraction
 accompany patients to medical procedures
 iPad, Look-and-find, i-spy, deep breathing, guided imagery
Child Life Interventions
 Sibling Support
 developmentally appropriate preparation for bedside visits,
developmentally appropriate education re: diagnosis, legacy building,
normalization
 Bereavement Support
 hand and feet molds, legacy building
Child Life on Pulmonary Unit
 Education
 Diagnosis teaching (CF, CFRD), lung transplant evaluation,
supplemental oxygen, respiratory treatments
 Preparation/Procedural Support/Distraction
 PICC placements, bronchoscopies, surgeries, IV placements
Child Life on Pulmonary Unit
 Normalization
 daily room visits, bedside play, school enrollment (if applicable), patient
pals, special events
 Coping
 diagnosis, treatment, treatment schedules, compliance with therapies
and medical team, medical play
Child Life & Medical Team
 Collaboration among interdisciplinary team
 Decrease need for sedation and increase
positive coping techniques among common
procedures
 Continuity of care
 Increase compliance with therapies
 schedules, advocate patient/family needs
Examples of Treatment Schedules
Daily schedule
8AM: Wake up/Eat Breakfast
9:30AM-10AM: Physical Therapy
N’s Daily Schedule
8 AM: Morning Respiratory Treatments
9AM: Breakfast
10AM- 12PM: Free Time (watch TV, play with volunteers)
12 PM: Eat Lunch
1PM -1:30 PM: Occupational Therapy
10:45AM: Physical Therapy
3PM-4PM: Nap time
12PM: Respiratory Treatments
4PM-5PM: Free Time ((watch TV, play with volunteers)
1PM: Eat Lunch
2PM-5PM: Free Time
4PM: Respiratory Treatments
5PM: Eat Dinner
After Dinner: Take a shower/bath before bed
6PM: Dinner
8PM: Nighttime Respiratory Treatments
8PM: Go to sleep
Interdisciplinary Team
 PT and CCLS
 RN and PT/CCLS
 RT and PT
 Pulmonary and ancillary
 Social Work and PT/CCLS
Coordination with Care Team
 Rounds
 Transplant rounds weekly with all services; improved coordination
of care between in and outpatient services
 CF rounds weekly with all the CF physicians and current attending
physician as well as RT, CCLS, and PT every Monday regarding all
CF patients admitted at that time
 Daily unit rounds with all disciplines
 Schedules
 RT daily schedule for all CF patients for respiratory care.
 Medications scheduled and written where all services can see
 Physical therapy attempts to schedule consistent times for
sessions
 PFTs scheduled on the unit, AM or PM, consistent days during the
week; posted for all services to see
PT and Child Life
 Assist with coordination of other services
 Procedures, daily schedules, family issues
 Encouragement and goal setting
 Reinforcement of discharge goals
 Hospital rules
 Making PT exciting and interesting
 Provide motivation and incentives (super stepper, CF
Rewards Program)
 Getting Creative
 Places to go in the hospital
 Special events and send offs
 End of life
E’s Question Scavenger Hunt
1. If you were an animal, what animal would you be?
2. Describe your favorite vacation.
3. What is your hidden talent?
4. What is your favorite food?
5. Do you have any pets?
6. Who is your favorite movie star?
7. What is your favorite color?
8. If you could have a superpower, what would it be?
9. If you were a princess, which one would you be?
10.
If you could pick a new name for yourself, what would
it be?
11.
Who is your favorite One Direction band member?
12.
What was your favorite toy or game as a child?
13.
What is your favorite type of candy?
14.
Who is the most famous person you’ve met?
Super stepper program
Super Stepper Program
 Program including implementation and
feedback changes
 Case report
 Feedback/challenges/changes, future studies
Super Stepper Program
 Basic Guidelines
 Who can participate
 Any CF patient who:
 is admitted with pulmonary exacerbation
 has active PT orders
 safe to participate
 Families and staff are encouraged to walk with patient
Super Stepper Program
 How it will be tracked
 All laps walked must be done outside of daily PT therapy session
 Patients (and family) record laps walked on Super Stepper card via
signature of family or staff
 Turn into Super Stepper box and collect new cards
 Who’s responsibility
 Patient and family responsibility to
record laps, honor system
 PT and CCLS collect cards each
Friday and award winners
Name/Room#: _________________
14WT
1 lap = 1 shoe
10 laps around unit = 1 mile
rd
1 lap around 3 floor bridge = 2 shoes (laps)
Return to Super Stepper Box by CL office
Get your shoes signed!
Get Steppin’!
Name/Room#: _________________
14WT
1 lap = 1 shoe
10 laps around unit = 1 mile
rd
1 lap around 3 floor bridge = 2 shoes (laps)
Return to Super Stepper Box by CL office
Get your shoes signed!
Get Steppin’!
Feedback/Modifications
Feedback/Modifications
 Unique winners
 Post lung transplant pt with B chest tubes to portable
suction (15 miles in 1 week)
 Pre lung transplant patient, biking laps for half credit
(10 miles in 1 week)
Research
We hypothesized that this program would
increase the amount of time pediatric patients
hospitalized with acute exacerbation due to
Cystic Fibrosis (CF) spent performing aerobic
activity, thereby improving endurance and
improving quality of life (QOL). The purpose of
this study is to evaluate the effectiveness of this
program.
Methods
 Modified randomized control trial with a series of 2 week
periods created, randomized & assigned as control or
intervention.
 Sample of convenience, based on admission of patients
to the acute care pulmonary unit at TCH
 Inclusion criteria: 6-19 years old (yo), admit with CF for
pulmonary exacerbation, length of stay > 7 days
 Exclusion criteria: droplet or airborne isolation, unstable
vital signs, supplemental oxygen dependence
Methods
 Data collected at admit and discharge
 6MWT distance and vital signs, BOT II strength assessment score,
CFQ-R scores
 Chart review
 age, gender, diagnoses, PFT values, weight & sputum organisms
 For each dependent variable, data was analyzed using a
split plot ANOVA using the Geisser-Greenhouse
adjustment.
 Admit to discharge differences are reported in the following
section.
 No differences between conditions and no significant
interactions were found.
Research
 Results
 No difference between the conditions tested, but differences
noted among the combined total sample.
 Statistically & clinically significant difference for admit and
discharge 6MWT distance among the total sample.
 Statically significant difference for FVC admit & discharge
values and for CFQ-R patient report values.
 Minimal or no change among BOT II strength score, vital signs,
RPE or CFQ-R parental report scores.
 No significant change in weight from admit to discharge. (42.37
kg/45.50 kg)
Case report patient A
Patient A
Admission Data
Primary Diagnosis (comorbidities)
Cystic Fibrosis (pancreatic insufficiency)
Age/gender
16 yo/male
PFTs
FVC 74.1%, FEV1 53%, FEF 25-75 25.2%
Weight
69.9 kg
Sputum Organisms
MRSA
CFQ-R Data
Health Perceptions 66.7
Emotional 80
Respiratory 50
Physical 75
6MWT Data
Distance 518.06M (76.6% predicted)
SpO2 80-97%
HR 99-120 bpm
RPE 10
BOT
Average for age
Patient A
Summary of Treatment Information
Seen Daily M-F
• Seen 9 out of 11 days
• Missed visits due to pt out of room or
scheduling issues
Endurance
• Bike, TM, stairs
• average time of 10-15 minutes (4
sessions)
• SpO2 89-96%, improving over time
• Mild knee pain 2/2 weakness
Strength
•
•
•
•
•
4 sessions
Core
BUE (posterior shoulder girdle)
BLE (hips, glutes)
Dynamic entire body (boxing, kinnect)
Stretching (focus on postural awareness)
•
•
•
•
3 sessions
Trunk
Pecs
Thoracic expansion
Patient A
Discharge Data (admit data)
PFTs
FVC 108.0% (74.1%), FEV1 91.7% (53%), FEF
25-75 60.9% (25.2%)
Weight
71 kg (69.9 kg)
Sputum Organisms
MRSA (vancomycin)
CFQ-R Data
Health Perceptions 88.9
Emotional 100
Respiratory 94.4
Physical 75
6MWT Data
Distance 665.25m (98% predicted)
518.06M (76.6% predicted)
SpO2 92-97% (80-97%)
HR 108-154 bpm (99-120)
RPE 13 (10)
BOT
Above average for age
(Average, 3 pt improvement)
Patient A
 Goal Achievement
 Patient will improve distance ambulated during 6MWT > 25m with SpO2 >
90% to demonstrate improved endurance within 2 weeks. (MET)
 Patient will complete 30 push ups in 30 seconds with improved form and
no scapular winging to demonstrate improved strength within 2 weeks.
(MET)
 Patient will demonstrate independence with HEP to demonstrate
understanding of recommendations in preparation for discharge. (MET)
 Patient will report ambulating 2x/day outside of daily therapy sessions to
demonstrate good compliance and improved understanding of activity
recommendations in preparation for discharge. (MET)
References
 ATS Statement: Guidelines for the Six-Minute Walk Test. Am J Respir Crit Care Med. 2002, 166: 111-117.
 Dietz, JC, Kartin, D, Kopp, K. (2007). Review of the bruininks-oseretsky test of motor proficiency, second
edition (bot-2).Physical & Occupational Therapy in Pediatrics, 27(4) 87-102.
doi:10.1300/J006v27n04_06
 Modi, A., Lim, C., Driscoll, K., Piazza-Waggoner, C., Quittner A., Woolridge J. Changes in Pediatric Health
Related Quality of Life in Cystic Fibrosis After IV Antibiotic Treatment for Pulmonary Exacerbations. J Clin
Psychol Med Settings. 2010, 17: 49-55. DOI 10.1007/s10880-009-9173-2
 Quittner, A., Sawicki, G., McMullen, A., Rasouliyan, L., Pasta, D., Yegin, A., Konstan, M. Psychometric
Evaluation of the Cystic Fibrosis Questionnaire-Revised in a National Sample. 2012. 21:1267-1278. DOI
10.1007/s11136-011-0036-z
 Rogers, D., Prasad SA., Doull, I. Exercise Testing in Children with Cystic Fibrosis. J R Soc Med. 2003,
96(suppl. 43): 23-29.
 Zemanick, E., et al. Measuring and Improving Respiratory Outcomes in Cystic Fibrosis Lung Disease:
Opportunities and Challenges to Therapy. Journal of Cystic Fibrosis. 2010, 9: 1-16.
 Williams,C., Benden, C., Stevens, D., Radtke, T. Exercise Training in Children and Adolescents with Cystic
Fibrosis: Theory into practice. International Journal of Pediatrics. 2010.
 Ulrich Et al. BMC Pulmonary Medicine. 2013, 12:49.