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Paediatric Long Term Ventilation Canada 2010

Paediatric Long Term Ventilation Canada 2010. Conflicts : Financial Nil Bias Definitely. A Review. Ian MacLusky MBBS, FRCP(C) Children’s Hospital of Eastern Ontario Ottawa. Paediatric Long Term Ventilation Outline. Current State Rationale Structure Common Problems.

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Paediatric Long Term Ventilation Canada 2010

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  1. Paediatric Long Term VentilationCanada 2010 • Conflicts: • Financial • Nil • Bias • Definitely A Review Ian MacLusky MBBS, FRCP(C) Children’s Hospital of Eastern Ontario Ottawa

  2. Paediatric Long Term VentilationOutline Current State Rationale Structure Common Problems Ventilation i.e. Rx of hypercapnoea by ­MV Not respiratory support (CPAP /BiPAP for OSA / CHF)

  3. Emersen “Iron Lung” Rancho Los Amigos Hospital, California. 1953

  4. Long Term Home Ventilation Improved equipment Invasive Non-invasive Changing attitudes / expectations Home better than hospital ­ Care of “invariably fatal” conditions ­ Parental education / information access Home cheaper than hospital (?) Simonds AK. Eur Resp J. 2003;22(S47):38s-46s

  5. ANTADIR http://www.antadir.com/IMG/pdf/OBSERVATOIRE_2006.pdf

  6. Canada? • 2006 Canada wide survey* • Non-invasive: c.300 patients • Invasive: c.100 patients *Jiemin Zhu, RN, MSc (Davis M. MB.ChB.)

  7. Hospital for Sick Children: 1990-2006 • 40 Invasive. 150 Non-invasive New Enrolments

  8. Patient Population 40 patients 150 patients

  9. Outcomes (SickKids) Total 190 enrolled Mean age enrolled 8.4 yrs Mean duration follow up 5.8 years 90 still followed, 100 no longer followed 8 Failed Rx 8 Referred to local center 27 Improved (no longer needing support) 28 Transferred, aged >18 years 29 Died

  10. Technologies • Non-invasive • Negative pressure (cuirasse) • Mask: BiPAP • Invasive • Tracheostomy • Phrenic Nerve Pacing Simonds AK. Eur Resp J. 2003;22(sup 47):38s-46s Toussaint M. Chron Respir Dis. 2007;4(3):167-177 Lewarski JS. Chest. 2007;132(2):671-6

  11. NIPPV Advantages • Ease of initiation and removal: undoable! • Preservation of airway defenses • Patient can eat, drink and communicate • Avoidance of complications of intubation • Less “technology dependency”: caregiver expertise

  12. NIPPV Disadvantages • Mask uncomfortable / claustrophobic • (poor compliance) • EPAP • Airway not protected • Air leaks • Maximum pressure (30 cm H2O)

  13. * Skin breakdown * NiPPV: Problems + + * + * Midfacial hypoplasia + Kasey K. Chest. 2000;117:916-8 Cannot use > 12 hrs /day NOT GUARANTEED VENTILATION

  14. Invasive Ventilation: IMV Pressure vs Volume cycled?

  15. Invasive Advantages • Guaranteed ventilation • Return circuit: exhaled volume • Access to airway (but ? ®­ need) • Nocturnal? • Can “cork” during day? • Speak • Cough • If not able to exhale • Passy-Muir “speaking valve”

  16. Invasive Disadvantages • Surgical intervention • Trach: Interferes with cough + auto PEEP • Increased caregiver expertise + time • Bypasses nose (filter/ humidify / sterilize) • Not readily “portable” • Not readily “undoable” • (1/3 do come off / ® NIPPV)

  17. Alternatives? . Phrenic nerve pacing • Portable (24 / 7) @ • Minimal caregiver expertise • (Not interfere cough / speech) BUT • Expensive ($40-$50K, + surgery) • May still need tracheostomy (?50-90%) • Not guaranteed ventilation (fixed RR/TV) • Still surgery: Complex insertion / setup • Phrenic nerve damage • Need intact phrenic nerve (?diaphragmatic*) Patient selection? @Guilleminault C. et al Sleep. 1997;14:369-77 *DiMarco AF at al. Chest. 2005;127:671-8

  18. Long Term Ventilation:Justification? • ­ Life expectancy (?) • NIPPV in NM disease Robert D, Argaud L. Crit Care. 2007;11(2):210-219

  19. Increased Life Expectancy? 99 patients 1980-95 (80 died) 1980-87 nil, 87-92 Cuirass, 92 on nIPPV Yasuma F at al. Chest 1996;109:590 Eagle M Neuromusc Dis 2002;12(10):926-29

  20. Long Term Ventilation Program:Justification? • ­ Life expectancy • ­ Improve quality vs. quantity of life • ¯ Sleep fragmentation (NIPPV) • ­ Blood gasses (carry over) Robert D, Argaud L. Crit Care. 2007;11(2):210-219

  21. * Long Term Ventilation Program:Justification? • ­ Life expectancy • ­ Improve quality vs. quantity of life • ¯ Sleep fragmentation (NIPPV) • ­ Blood gasses (carry over) • ­ QOL (?) Markstrom A et al. Chest 2002;122(5):1695-1700

  22. Long Term Ventilation Program:Justification? • ­ Life expectancy • ­ Improve quality vs. quantity of life • ­ QOL (?) Whose evaluating? • Patients > family > caregivers “It’s Okay, it helps me breathe”* • Disease vs. ventilation?@ *Earle RJ et al. J Child Health Care 2006;10:270-82 Noyes J. J Advan Nurse 2006;56(4):392-403 @ Mah JK Pediatr Neurol 2008;39(2):102-107

  23. Long Term Ventilation Program:Justification? • ­ Life expectancy • ­ Improve quality as well a quantity of life • ¯ Costs (?) • Hospital

  24. Impact on Hospitalization? • 15 NM children • Age 11.7 (3.4-17.8) • NPPV at least 1 year Year before vs. year after • Days in hospital ¯85% (48 ®7.0) • Days in ICU ¯68% (12 ®3.9) Katz S at al. Arch Dis Child 2004;89:121-124 (Leger P at al. Chest 1994;105:100-105)

  25. Outcomes (SickKids) 29 Deaths (9 BiPAP, 20 Invasive) Mean age enrolled 5.6 years Mean duration follow up 1.3 years 9/29 deaths SickKids, 7/9 ICU

  26. Long Term Ventilation Program:Justification? • ­ Life expectancy • ­ Improve quality as well a quantity of life • ¯ Costs (?) ¯ Hospital ­ Family (?)

  27. Long Term Ventilation Program:Family Impact? Parents (mother) ­Time + financial demands Physical overburden ­ Emotional turmoil Stress / fear Child “different” from societal norm Loss family privacy / independence Social Isolation Carnevale F. Pediatrics 2006;117(1):e48-e60 Heaton J et al. Health Soc Care Comm 2005;13(5):441-450 Wang K-W K. J Advan Nurs 2004;4(1):36-46

  28. Long Term Ventilation Program:Family Impact? Parents Siblings Jealousy / resentment / rivalry Carnevale F. Pediatrics 2006;117(1):e48-e60 Wang K-W K. J Advan Nurs 2004;4(1):36-46

  29. Long Term Ventilation Program:Justification? • Prolonged Life • Improve quality as well a quantity of life • Costs (?) ¯ Hospital ­ Family / community Net? Wang K-W K. J Advan Nurs 2004;4(1):36-46

  30. What is Required to Succeed? • A Plan (prepared and agreed on in advance) • A Team • Tertiary Center • Community • Lines of communication • Continuity of care • Time! • “Informed Consent” when child already trach’ed? • Parents (and child) time to digest • Identify caregivers: buy in from community • Team to review family needs / resources • But: How long is actually required? Ballangrud R. J Advan Nurs 2008;65(21):425-434

  31. Issues1 • When to start ventilation, and on whom? • 16 European countries • >10 fold variation frequency + who ventilated Lloyd-Owen SJ at al. Eur Resp J 2005;25(6):1025-1031

  32. Issues2 • When to start ventilation, and on whom*? • NIPPV: • Recurrent pneumonias (NM patients) • Nocturnal hypoventilation (sleep disturbance)@ • Daytime hypercapnoea • Prophylactic? • Ineffective • Unlikely to be tolerated *Fauroux B Resp Med 2009;103:574-581 @Ward S at al. Thorax 2005;60(12):1019-1024

  33. Issues3 • When to start ventilation, and on whom? • Invasive: ? • No alternative (sure?) • Potential for stability or improvement? • CCAHS • Slowly progressive NM disease • Rapidly progressive? • SMA1*, tumour • Don’t know? Yes No Yes (?) *Roper H et al. Arch Dis Child 2010;95:845-849

  34. Problems1 • Availability of Necessary Resources? • Equipment • Ventilator: provision and maintenance • How long to get? • “Expendables”: tubing, etc.? • Other? • Suction • Oximeter • Trained community caregivers • How much funded? • (Great in theory:- In practice availability)? • Alternatives? i.e. Health Care Support Workers (HCSW) • Availability of Respite?

  35. Problems2 • Availability of Necessary Resources? • Equipment • Ventilator: provision and maintenance • “Expendables”: tubing, etc.? • Other? • Trained community caregivers • Respite? • Transition to Adult Care? Need National Standards? Optimum vs. bare minimum?

  36. Problems3Organization: Theoretical Community MD Community Caregivers Tertiary Care Center Community Care Access Patient Family School, etc

  37. Organization: Actual Community caregivers Tertiary care center Neurology Community MD ER Respirology Paediatrics CCAC Patient ? Gastro/ Nutrition Family Nurse Coordinator School, etc Physio, RT, etc Who do the parents call at 2:00 am Sat?

  38. Ethics? • Non-invasive: easy • -“Undoable” therefore patient can determine • Invasive • Promising what we can’t deliver? • Prolonging life or prolonging death? • Progressive / Terminal case (SMA1, HIE) • Parents “want everything done”? • Whose needs are we meeting? • Who decides? The courts Brazier M. Med Law Rev 2005;13:671-8

  39. Ethics (of Finite Resources)?

  40. Conclusions1 • Increasing numbers children home on chronic ventilation- NIPPV and IMV. (success?) • Heterogeneous population, require complex, coordinated care. • Significant burden • Family • Community (financial, personnel, knowledge)

  41. Conclusion2 • Improvements required • Improved coordination of healthcare • Increased resources: • Increased availability of community care & respite • Increased training and availability of local health care resources* • Alternative to “RN” caregivers? (Ventilation Support Worker: NHS 2007) National minimum standards? National Registry: outcomes? *Hewitt-Taylor. Inten Crit Care Nurs 2004;20:93-102

  42. http://www.longtermventilation.nhs.uk/

  43. “Suck It Up Princess” Renee Rodrigues CMD TV Ontario www.superstarrenee.com/index.php

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