Research Overview

The Critical Care, Anesthesia, and Perioperative Extension (CAPE) Program is a comprehensive and longitudinal care practice group for children with significant special health care needs, technology dependence and medical complexities. Services include consultation and support to families and institutions who are considering homecare of ventilator assisted children, long-term coordination of care including home visits, and perioperative consultation and planning around critical care recovery and rehabilitation. Transitional care, coordination with community services, and education out-reach are also offered to improve the quality of life for these children and their families.

Health services research efforts to date have focus on extensive evaluation of health-related quality of life, impact on family, clinical outcomes, care models and resource utilization for the cohort of children enrolled in the Critical Care, Anesthesia, Perioperative Extension (CAPE) and Home Ventilation Program, which I established in 2007. Partnering with colleagues in other disciplines, I have pursued clinical investigation for cohorts of children with chronic respiratory failure, including multi-institutional therapeutic trials in spinal muscular atrophy, nutritional assessment and provision in chronic illness, and preliminary tracheal microbiome studies. In 2017, I established the Chronic Critical Illness and Long-term Ventilation subgroup within the Pediatric Acute Lung Injury and Sepsis Investigators (PALISI).

Research Background

I am a pediatric critical care physician with a special interest in children with chronic technology dependence. Through research, clinical interventions, and teaching, I have extended critical care services beyond the confines of the intensive care unit to optimize outcomes, quality of care, and resource utilization for these children and their families. My clinical background and training reflect a consistent interest in the continuum of acute and chronic pediatric illness. After completing pediatric training, I pursued an extended critical care fellowship to allow for additional clinical experience as a staff physician at a pediatric rehabilitation center as well as in the complex care services at Boston Medical Center and Boston Children’s Hospital (BCH). My health services and clinical research efforts focus on the interface between critical care services and children with chronic respiratory insufficiency and other complex special heath care needs. After completing general pediatrics training, I pursued and published the first descriptive study of children with neurodevelopmental disabilities in the pediatric intensive care (ICU) setting. My qualitative needs assessment study for the parents of children with disabilities in the ICU was published in Critical Care Medicine, one of the premier journals in our field. Findings informed the development of a year-long curriculum in a local Program to Enhance Relational and Communications Skills (PERCS).

 

Education

Medical School

University of California, Los Angeles School of Medicine
1996 Los Angeles CA

Residency

Pediatrics Boston Combined Residency Program (BCRP)
1999 Boston MA

Residency

Chief Resident, Pediatrics Boston Combined Residency Program (BCRP)
2000 Boston MA

Fellowship

Pediatric Critical Care Boston Children's Hospital
2004 Boston MA

Publications

  1. Home Health Care Research for Children With Disability and Medical Complexity. Pediatrics. 2025 Feb 01; 155(2). View Abstract
  2. Prevalence, management, health-care burden, and 90-day outcomes of prolonged mechanical ventilation in the paediatric intensive care unit (LongVentKids): an international, prospective, cross-sectional cohort study. Lancet Child Adolesc Health. 2025 Jan; 9(1):37-46. View Abstract
  3. Efficacy of parenteral bronchodilators on ventilatory outcomes in pediatric critical asthma: a national cohort study. Allergy Asthma Proc. 2025 Jan 01; 46(1):e6-e12. View Abstract
  4. Spinal Muscular Atrophy Update in Best Practices: Recommendations for Treatment Considerations. Neurol Clin Pract. 2025 Feb; 15(1):e200374. View Abstract
  5. Nutrition support in children with medical complexity and chronic critical illness: A narrative review. Nutr Clin Pract. 2025 Feb; 40(1):54-63. View Abstract
  6. It's Time to Invest in Children Receiving Home Mechanical Ventilation. Ann Am Thorac Soc. 2024 Oct; 21(10):1387-1388. View Abstract
  7. An algorithm for discontinuing mechanical ventilation in boys with x-linked myotubular myopathy after positive response to gene therapy: the ASPIRO experience. Respir Res. 2024 Sep 16; 25(1):342. View Abstract
  8. Characteristics and Outcomes of Home-Ventilated Children Undergoing Noncardiac Surgery. Hosp Pediatr. 2024 09 01; 14(9):749-757. View Abstract
  9. Influenza and COVID-19 Vaccination Rates Among Children Receiving Long-Term Ventilation. JAMA Netw Open. 2024 Aug 01; 7(8):e2430989. View Abstract
  10. A Conspicuously Absent Commandment: Thou Shall Not Tracheotomize. Pediatr Crit Care Med. 2024 Aug 01; 25(8):769-771. View Abstract
  11. Achieving Enteral Autonomy in Children with Intestinal Failure Following Inpatient Admission: A Case Series. J Pediatr. 2024 Dec; 275:114226. View Abstract
  12. Pediatric pulmonology year in review-Pediatric pulmonary critical care. Pediatr Pulmonol. 2024 Nov; 59(11):2748-2753. View Abstract
  13. Perioperative Health Interventions in Children With Chronic Neuromuscular Conditions Undergoing Major Musculoskeletal Surgery: A Scoping Review. Hosp Pediatr. 2024 06 01; 14(6):e281-e291. View Abstract
  14. Child opportunity and outcomes in pediatric critical asthma: A multicenter analysis. J Allergy Clin Immunol Pract. 2024 Aug; 12(8):2187-2189. View Abstract
  15. Outcomes for Pediatric Oncology and Hematopoietic Stem Cell Transplantation Patients Who Undergo Tracheostomy Placement: A Pediatric Health Information System Database Cohort Study, 2009-2020. Pediatr Crit Care Med. 2024 Jun 01; 25(6):e283-e290. View Abstract
  16. Bringing Pediatric Chronic Critical Illness Into Acute Focus. JAMA Netw Open. 2024 03 04; 7(3):e241816. View Abstract
  17. Autism and neurodevelopmental disability risks in children with tracheostomies and ventilators. Pediatr Pulmonol. 2024 May; 59(5):1380-1387. View Abstract
  18. Safety and efficacy of gene replacement therapy for X-linked myotubular myopathy (ASPIRO): a multinational, open-label, dose-escalation trial. Lancet Neurol. 2023 12; 22(12):1125-1139. View Abstract
  19. The myotubular and centronuclear myopathy patient registry: a multifunctional tool for translational research. Neuromuscul Disord. 2024 Feb; 35:42-52. View Abstract
  20. Tracheostomy Timing During Pediatric Cardiac Intensive Care: Single Referral Center Retrospective Cohort. Pediatr Crit Care Med. 2023 11 01; 24(11):e556-e567. View Abstract
  21. Real-world analysis of healthcare resource utilization by patients with X-linked myotubular myopathy (XLMTM) in the United States. Orphanet J Rare Dis. 2023 06 06; 18(1):138. View Abstract
  22. Hospital Access Patterns of Children With Technology Dependence. Pediatrics. 2023 03 20; 151(4). View Abstract
  23. Child Opportunity Index and Emergent PICU Readmissions: A Retrospective, Cross-Sectional Study of 43 U.S. Hospitals. Pediatr Crit Care Med. 2023 05 01; 24(5):e213-e223. View Abstract
  24. A Call for Defining Pediatric Chronic Critical Illness: Moving Beyond I Know It When I See It. Pediatr Crit Care Med. 2023 02 01; 24(2):179-181. View Abstract
  25. Early childhood developmental skills of children with tracheostomies and ventilators recently discharged home. Pediatr Pulmonol. 2023 03; 58(3):853-865. View Abstract
  26. A Core Outcome Measurement Set for Pediatric Critical Care. Pediatr Crit Care Med. 2022 11 01; 23(11):893-907. View Abstract
  27. Airway Bacterial Colonization, Biofilms and Blooms, and Acute Respiratory Infection. Pediatr Crit Care Med. 2022 10 01; 23(10):e476-e482. View Abstract
  28. Outcomes for Children With Pulmonary Hypertension Undergoing Tracheostomy Placement: A Multi-Institutional Analysis. Pediatr Crit Care Med. 2022 09 01; 23(9):717-726. View Abstract
  29. Nusinersen for Patients With Spinal Muscular Atrophy: 1415 Doses via an Interdisciplinary Institutional Approach. Pediatr Neurol. 2022 07; 132:33-40. View Abstract
  30. INCEPTUS Natural History, Run-in Study for Gene Replacement Clinical Trial in X-Linked Myotubular Myopathy. J Neuromuscul Dis. 2022; 9(4):503-516. View Abstract
  31. Intrahepatic Cholestasis Is a Clinically Significant Feature Associated with Natural History of X-Linked Myotubular Myopathy (XLMTM): A Case Series and Biopsy Report. J Neuromuscul Dis. 2022; 9(1):73-82. View Abstract
  32. Clinical Characteristics and Outcomes of Children with Acute Catastrophic Brain Injury: A 13-Year Retrospective Cohort Study. Neurocrit Care. 2022 06; 36(3):715-726. View Abstract
  33. Tele-mental health intervention for caregivers of children on home ventilation: A randomized control trial. Child Care Health Dev. 2022 01; 48(1):80-87. View Abstract
  34. Outcome Measures Following Critical Illness in Children With Disabilities: A Scoping Review. Front Pediatr. 2021; 9:689485. View Abstract
  35. Health-related quality of life outcome measures for children surviving critical care: a scoping review. Qual Life Res. 2021 Dec; 30(12):3383-3394. View Abstract
  36. Chronic Illness in Pediatric Critical Care. Front Pediatr. 2021; 9:686206. View Abstract
  37. Clinical, neuroimaging, and molecular spectrum of TECPR2-associated hereditary sensory and autonomic neuropathy with intellectual disability. Hum Mutat. 2021 06; 42(6):762-776. View Abstract
  38. Costs and health resource use in patients with X-linked myotubular myopathy: insights from US commercial claims. J Manag Care Spec Pharm. 2021 Aug; 27(8):1019-1026. View Abstract
  39. Dysphagia Phenotypes in Spinal Muscular Atrophy: The Past, Present, and Promise for the Future. Am J Speech Lang Pathol. 2021 05 18; 30(3):1008-1022. View Abstract
  40. "New Trach Mom Here…": A qualitative study of internet-based resources by caregivers of children with tracheostomy. Pediatr Pulmonol. 2021 07; 56(7):2274-2283. View Abstract
  41. Discharge Practices for Children with Home Mechanical Ventilation across the United States. Key-Informant Perspectives. Ann Am Thorac Soc. 2020 11; 17(11):1424-1430. View Abstract
  42. Home nursing for children with home mechanical ventilation in the United States: Key informant perspectives. Pediatr Pulmonol. 2020 12; 55(12):3465-3476. View Abstract
  43. Patient and caregiver experiences at a Multidisciplinary Tracheostomy Clinic. Int J Pediatr Otorhinolaryngol. 2020 Oct; 137:110250. View Abstract
  44. "This Is How Hard It Is". Family Experience of Hospital-to-Home Transition with a Tracheostomy. Ann Am Thorac Soc. 2020 07; 17(7):860-868. View Abstract
  45. Ethical decision-making for children with neuromuscular disorders in the COVID-19 crisis. Neurology. 2020 08 11; 95(6):260-265. View Abstract
  46. Readmission drivers for children with medical complexity: Home nursing shortages cause health crises. Pediatr Pulmonol. 2020 06; 55(6):1474-1480. View Abstract
  47. X-linked myotubular myopathy and pulmonary blebs: Not just a muscle disorder. Muscle Nerve. 2019 12; 60(6):E36-E38. View Abstract
  48. Mortality and respiratory support in X-linked myotubular myopathy: a RECENSUS retrospective analysis. Arch Dis Child. 2020 04; 105(4):332-338. View Abstract
  49. Bridging the Stressful Gap Between ICU and Home: Medical Simulation for Pediatric Patients and Their Families. Pediatr Crit Care Med. 2019 04; 20(4):e221-e224. View Abstract
  50. Pre-Nusinersen Hospitalization Costs of Children With Spinal Muscular Atrophy. Pediatr Neurol. 2019 03; 92:3-5. View Abstract
  51. Pediatric patients with home mechanical ventilation: The health services landscape. Pediatr Pulmonol. 2019 01; 54(1):40-46. View Abstract
  52. Tracheal Microbiota in Patients With a Tracheostomy Before, During and After an Acute Respiratory Infection. Pediatr Infect Dis J. 2018 11; 37(11):e269-e271. View Abstract
  53. Pediatric Specialty Care Model for Management of Chronic Respiratory Failure: Cost and Savings Implications and Misalignment With Payment Models. Pediatr Crit Care Med. 2018 05; 19(5):412-420. View Abstract
  54. Comprehensive nutritional and metabolic assessment in patients with spinal muscular atrophy: Opportunity for an individualized approach. Neuromuscul Disord. 2018 06; 28(6):512-519. View Abstract
  55. Ethical Challenges Confronted When Providing Nusinersen Treatment for Spinal Muscular Atrophy. JAMA Pediatr. 2018 Feb 01; 172(2):188-192. View Abstract
  56. Diagnosis and management of spinal muscular atrophy: Part 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscul Disord. 2018 02; 28(2):103-115. View Abstract
  57. Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics. Neuromuscul Disord. 2018 03; 28(3):197-207. View Abstract
  58. Leveraging pediatric PROMIS item banks to assess physical functioning in children at risk for severe functional loss. J Patient Rep Outcomes. 2017; 1(1):10. View Abstract
  59. The temporal dynamics of the tracheal microbiome in tracheostomised patients with and without lower respiratory infections. PLoS One. 2017; 12(8):e0182520. View Abstract
  60. Understanding the Relationship Between Child Health-Related Quality of Life and Parent Emotional Functioning in Pediatric Hematopoietic Stem Cell Transplant. J Pediatr Psychol. 2017 08 01; 42(7):804-814. View Abstract
  61. Predicting Health Care Utilization for Children With Respiratory Insufficiency Using Parent-Proxy Ratings of Children's Health-Related Quality of Life. J Pediatr Health Care. 2017 Nov - Dec; 31(6):654-662. View Abstract
  62. The Impact on Family of Pediatric Chronic Respiratory Failure in the Home. J Pediatr. 2016 08; 175:40-6. View Abstract
  63. Chronic respiratory failure: Utilization of a pediatric specialty integrated care program. Healthc (Amst). 2017 Mar; 5(1-2):23-28. View Abstract
  64. Two-year mortality, complications, and healthcare use in children with medicaid following tracheostomy. Laryngoscope. 2016 11; 126(11):2611-2617. View Abstract
  65. Nutritional Status and Nutrient Intake Challenges in Children With Spinal Muscular Atrophy. Pediatr Neurol. 2016 Apr; 57:80-3. View Abstract
  66. Evidence-based guideline summary: Evaluation, diagnosis, and management of congenital muscular dystrophy: Report of the Guideline Development Subcommittee of the American Academy of Neurology and the Practice Issues Review Panel of the American Association of Neuromuscular & Electrodiagnostic Medicine. Neurology. 2015 Oct 20; 85(16):1432. View Abstract
  67. Author response. Neurology. 2015 Oct 20; 85(16):1432-3. View Abstract
  68. Impact of Individualized Diet Intervention on Body Composition and Respiratory Variables in Children With Respiratory Insufficiency: A Pilot Intervention Study. Pediatr Crit Care Med. 2015 Jul; 16(6):e157-64. View Abstract
  69. Evidence-based guideline summary: evaluation, diagnosis, and management of congenital muscular dystrophy: Report of the Guideline Development Subcommittee of the American Academy of Neurology and the Practice Issues Review Panel of the American Association of Neuromuscular & Electrodiagnostic Medicine. Neurology. 2015 Mar 31; 84(13):1369-78. View Abstract
  70. Metabolic assessment and individualized nutrition in children dependent on mechanical ventilation at home. J Pediatr. 2015 Feb; 166(2):350-7. View Abstract
  71. Trial of telemedicine for patients on home ventilator support: feasibility, confidence in clinical management and use in medical decision-making. J Telemed Telecare. 2014 Dec; 20(8):441-9. View Abstract
  72. Current applications of metabolic monitoring in the pediatric intensive care unit. Nutr Clin Pract. 2014 Jun; 29(3):338-47. View Abstract
  73. Family-centered assessment and function for children with chronic mechanical respiratory support. J Pediatr Health Care. 2014 Jul-Aug; 28(4):295-304. View Abstract
  74. Long-term ventilation: charting a pathway home. Arch Dis Child. 2013 Sep; 98(9):653. View Abstract
  75. Pediatric neurocritical care: a neurology consultation model and implication for education and training. Pediatr Neurol. 2013 Mar; 48(3):206-11. View Abstract
  76. Chronic conditions among children admitted to U.S. pediatric intensive care units: their prevalence and impact on risk for mortality and prolonged length of stay*. Crit Care Med. 2012 Jul; 40(7):2196-203. View Abstract
  77. End-of-life discussions and advance care planning for children on long-term assisted ventilation with life-limiting conditions. J Palliat Care. 2012; 28(1):21-7. View Abstract
  78. Stretched and sheared microcatheter retained after onyx embolization of infantile myofibromatosis. Interv Neuroradiol. 2011 Jun; 17(2):261-6. View Abstract
  79. Pediatric resident attitudes toward caring for children with severe disabilities. Am J Phys Med Rehabil. 2010 Sep; 89(9):765-71. View Abstract
  80. Patient characteristics associated with in-hospital mortality in children following tracheotomy. Arch Dis Child. 2010 Sep; 95(9):703-10. View Abstract
  81. Predictors of clinical outcomes and hospital resource use of children after tracheotomy. Pediatrics. 2009 Aug; 124(2):563-72. View Abstract
  82. Anesthesia and perioperative medical management of children with spinal muscular atrophy. Paediatr Anaesth. 2009 Nov; 19(11):1054-63. View Abstract
  83. Experiencing the pediatric intensive care unit: perspective from parents of children with severe antecedent disabilities. Crit Care Med. 2009 Jun; 37(6):2064-70. View Abstract
  84. Successful and safe delivery of anesthesia and perioperative care for children with complex special health care needs. J Clin Anesth. 2009 May; 21(3):165-72. View Abstract
  85. Medicine and children with special health care needs: conflict with the cult of cure. J Dev Behav Pediatr. 2008 Aug; 29(4):309-10. View Abstract
  86. Clinical Outcomes and Hospital Use of Children Following Tracheostomy. Pediatric Academic Societies. 2008. View Abstract
  87. Included but isolated: early intervention programmes provision for children and families with chronic respiratory support needs. Child Care Health Dev. 2008 May; 34(3):373-9. View Abstract
  88. Specialty services for children with special health care needs: supplement not supplant the medical home. Arch Dis Child. 2008 Jan; 93(1):2-4. View Abstract
  89. Chronic ventilator need in the community: a 2005 pediatric census of Massachusetts. Pediatrics. 2007 Jun; 119(6):e1280-7. View Abstract
  90. Gastric outlet obstruction in an infant: lactobezoar. Am J Emerg Med. 2007 Jan; 25(1):98-9. View Abstract
  91. Weaning children from mechanical ventilation in a post-acute care setting. Pediatr Rehabil. 2006 Oct-Dec; 9(4):365-72. View Abstract
  92. The informed patient (column - Laura Landro): Pediatric hospitals teach doctors ways to convey tragic news. Cited in article. Wall Street Journal. 2006. View Abstract
  93. Resident Attitudes Toward Caring for Children with Severe Disabilities. 2006. View Abstract
  94. Acute respiratory distress syndrome in children with severe motor and intellectual disabilities. Brain Dev. 2006 Jun; 28(5):342. View Abstract
  95. Research. Oxford Textbook of Palliative Care for Children, Goldman A, Hain R, Liben S (eds). 2006; 615-647. View Abstract
  96. Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities. J Dev Behav Pediatr. 2005 Oct; 26(5):361-5. View Abstract
  97. An opportunity: critical care beyond the intensive care unit. Pediatr Crit Care Med. 2005 May; 6(3):327-8. View Abstract
  98. Jading. Pediatr Crit Care Med. 2005 Jan; 6(1):93; author reply 93. View Abstract
  99. Inpatient pediatric pulmonary rehabilitation: development of a minimum data set. Advance for Directors in Rehabilitation. 2005; 14(2):57-68. View Abstract
  100. Congenital neurodevelopmental diagnoses and an intensive care unit: defining a population. Pediatr Crit Care Med. 2004 Jul; 5(4):321-8. View Abstract
  101. Outcome rating scales for pediatric head injury. J Intensive Care Med. 2004 Jul-Aug; 19(4):205-19. View Abstract
  102. Developing a pediatric pulmonary multidisciplinary data set: meeting everyone's needs, clinician, patient, and researcher. 2004. View Abstract
  103. Evidence-based medicine, predictive model review of Robertson CMT, Joffe AR, Moore AJ, Watt JM. Neurodevelopmental outcome of young pediatric intensive care survivors of serious brain injury. (Pediatric Critical Care Medicine 2002; 3(4):345-350) http://pedsccm.wustl.edu/EBJournal_club.html. 2003. View Abstract
  104. Measuring the health status of pediatric ICU survivors. Surviving Intensive Care. 2003; 107-115. View Abstract
  105. Evidence-based medicine, predictive models review of Hatherill M, McIntyre AG, Wattie M, Murdoch IA. Early hyperlactatemia in critically ill children. (Intensive Care Medicine 2000; 26:314-318) http://pedsccm.wustl.edu/EBJournal_club.html. 2001. View Abstract
  106. Evidence-based medicine, quality of life review of Sheridan RL et al. Longterm outcomes of children surviving massive burns (JAMA 2000; 283:69-73) http://pedsccm.wustl.edu/EBJournal_club.html. 2001. View Abstract
  107. A pain in the heel: sneaker puncture wounds. Infectious Diseases in Children. 1999; 12(2):32. View Abstract
  108. Advances in pediatric neurosurgery - surgical management of epileptic surgery. Headlines. 1993; 12-14. View Abstract

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