Collaborative Care of Pediatric Pulmonary Patients During

Hospitalization

Texas Children’s HospitalEryn Housinger, PT, DPT Morgan Sullivan, MS, CCLS

Combined Sections Meeting 2016Anaheim, California, February 17 -20,

2016

DisclosureSpeakers have no disclosures or conflicts of interest

Session Learning Objectives1. 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 MembersPulmonology team (attending, fellow, residents)*Social Worker*Dietician*PharmacistBedside RNCCLS and Child Life PartnerPT and PTA and Respiratory TherapistPsychologist or PsychiatristRespiratory 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 DeficiencyMore 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 ProtocolAll 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 Evaluation6MWT

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 EvaluationBOT II Strength 5 components

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 EvaluationCFQ-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 availableExcel scoring systemCompleted 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 PurposesGet Stronger

Increase Endurance

Breathe Better

Increase Chest Mobility

Have fun!

Physical Therapy Purposes

Get Stronger 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 PurposesHave 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 participationAM PT sessions before 10AMDifficulty with schedule

Meals and supplements, IV meds, RT treatmentsBoredom

variety of activity necessary, only so many places you can go within the hospital

keeping it challengingThey 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

N’s Daily Schedule

8 AM: Morning Respiratory Treatments 9AM: Breakfast

10:45AM: Physical Therapy 12PM: Respiratory Treatments

1PM: Eat Lunch 2PM-5PM: Free Time

4PM: Respiratory Treatments 6PM: Dinner

8PM: Nighttime Respiratory Treatments

Daily schedule

8AM: Wake up/Eat Breakfast

9:30AM-10AM: Physical Therapy

10AM- 12PM: Free Time (watch TV, play with volunteers)

12 PM: Eat Lunch

1PM -1:30 PM: Occupational Therapy

3PM-4PM: Nap time

4PM-5PM: Free Time ((watch TV, play with volunteers)

5PM: Eat Dinner

After Dinner: Take a shower/bath before bed

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 LifeAssist with coordination of other services

Procedures, daily schedules, family issuesEncouragement 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 reportFeedback/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 1 lap around 3rd floor bridge = 2 shoes (laps)

Return to Super Stepper Box by CL office Get your shoes signed!

Get Steppin’!

Feedback/Modifications

Super Stepper Feedback:

Winner of Award

Fun way to do something and exercise at the

same time

Good activity to do during the day

Helped me get better faster

It was fun and I wanted to win every week

Cool to get poster on your doorSuper Stepper Feedback:Good way to get all the stuff (Mucous) out of lungsIt was really fun Fun to exercise and runPretty great to win the t-shirtWanted to win every weekGood way to get out of the room and be active

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 AAdmission 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 80Respiratory 50Physical 75

6MWT Data Distance 518.06M (76.6% predicted)SpO2 80-97%HR 99-120 bpmRPE 10

BOT Average for age

Patient ASummary 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 ADischarge 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 88.9Emotional 100Respiratory 94.4Physical 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.