Collaborative Care of Pediatric Pulmonary Patients During Hospitalization

1. 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

2. Disclosure Speakers have no disclosures or conflicts of interest

3. Session Learning Objectives • Identify reasons for hospitalization among pediatric patients with pulmonary disease (including CF). • Identify team members involved in establishing plan of care once admitted. • 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. • Understand motivational challenges within pediatric pulmonary population and ways to increase adherence for treatment completion. • Understand ways to improve patient reported quality of life while admitted for prolonged hospitalizations.

4. Outline • Background • Physical Therapy with a Pulmonary Focus • Child Life Services • Interdisciplinary Team • Super Stepper Program • Questions

5. Background

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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

12. Physical Therapy Program

13. Common Pulmonary Diagnoses • Cystic Fibrosis • Pulmonary Hypertension • Surfactant Deficiency • Lung Transplant • Bronchiolitis Obliterans

14. 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

15. 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

16. 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)

17. 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.

18. 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)

19. 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

20. 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

21. Physical Therapy Protocol

22. 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?

23. 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

24. 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

25. 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

26. 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 available • Excel scoring system • Completed by PT or CCLS

27. 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

28. Physical Therapy Purposes • Get Stronger • Increase Endurance • Breathe Better • Increase Chest Mobility • Have fun!

29. 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

30. 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

31. 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

32. 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…

33. CHILD LIFE PROGRAM

34. 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

35. 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

36. 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

37. 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

38. 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

39. 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

40. 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

41. 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

42. Examples of Treatment Schedules

43. Interdisciplinary Team • PT and CCLS • RN and PT/CCLS • RT and PT • Pulmonary and ancillary • Social Work and PT/CCLS

44. 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

45. 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

47. Super stepper program

48. Super Stepper Program • Program including implementation and feedback changes • Case report • Feedback/challenges/changes, future studies

49. 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

50. 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