Long-term home ventilation of children in Italy: A national survey
F. Racca MD
Department of Anesthesiology and Intensive Care Medicine, San Giovanni Battista-Molinette Hospital, University of Turin, Turin, Italy
Search for more papers by this authorG. Berta MD
Department of Anesthesiology and Intensive Care Medicine, San Giovanni Battista-Molinette Hospital, University of Turin, Turin, Italy
Search for more papers by this authorM. Sequi STAT D
Department of Public Health, Laboratory for Mother and Child Health, “Mario Negri” Pharmacological Research Institute, Milan, Italy
Search for more papers by this authorE. Bignamini MD
Pulmonology Unit, Regina Margherita University Children's Hospital, Turin, Italy
Search for more papers by this authorE. Capello MD
Department of Anesthesiology and Intensive Care Medicine, San Giovanni Battista-Molinette Hospital, University of Turin, Turin, Italy
Search for more papers by this authorR. Cutrera MD
Respiratory Unit, Bambino Gesu' Children's Research Hospital, Rome, Italy
Search for more papers by this authorG. Ottonello MD
Anesthesiology and Intensive Care Medicine Unit, G. Gaslini Institute, Genoa, Italy
Search for more papers by this authorV.M. Ranieri MD
Department of Anesthesiology and Intensive Care Medicine, San Giovanni Battista-Molinette Hospital, University of Turin, Turin, Italy
Search for more papers by this authorI. Salvo MD
Department of Anesthesiology and Intensive Care, Vittore Buzzi Children's Hospital, Milan, Italy
Search for more papers by this authorR. Testa
Intensive Care Unit, Santobono Hospital, Naples, Italy
Search for more papers by this authorA. Wolfler MD
Department of Anesthesiology and Intensive Care, Vittore Buzzi Children's Hospital, Milan, Italy
Search for more papers by this authorCorresponding Author
M. Bonati MD
Department of Public Health, Laboratory for Mother and Child Health, “Mario Negri” Pharmacological Research Institute, Milan, Italy
Head of Department of Public Health and of the Laboratory for Mother and Child Health “Mario Negri” Pharmacological Research Institute Via Giuseppe La Masa 19, 20156 Milan, Italy.Search for more papers by this authoron behalf of the “LTV Pediatric Italian Network”
“LTV Pediatric Italian Network”: Anna Costantino, Alessandria; Raffaella Pagni, Ancona; Anna Maria Miorelli, Arco; Paolo Castaldi, Cagliari; Mariano Cabras, Carbonia; Bruno Dengo, Castelfranco Veneto; Augusto Biasini, Cesena; Francesco Morandi, Erba; Carlo Minetti, Giancarlo Ottonello, Genova; Paolo Banfi, Maurizio Bonati, Edoardo Calderini, Edi Prandi, Ida Salvo, Marco Sequi, Andrea Wolfler, Marco Zucconi, Milano; Giuseppe Fiorentino, Antonio Maddalena, Raffaele Testa, Napoli; Grazia Crescimanno, Anna Guddo, Palermo; Livio Carnevale, Pavia; Andrea Vianello, Padova; Giancarlo Piccinini, Ravenna; Valter Bottari, Reggio Emilia; Maurizio Corbari, Renato Cutrera, Martino Pavone, Roma; Giacomo Berta, Elisabetta Bignamini, Elena Capello, Lorenzo Del Sorbo, Cesare Gregoretti, Maria Maspoli, Fabrizio Racca, Marco V. Ranieri, Torino; Antonio Peratoner, Udine; Monica Benedetti, Verona.
Search for more papers by this authorF. Racca MD
Department of Anesthesiology and Intensive Care Medicine, San Giovanni Battista-Molinette Hospital, University of Turin, Turin, Italy
Search for more papers by this authorG. Berta MD
Department of Anesthesiology and Intensive Care Medicine, San Giovanni Battista-Molinette Hospital, University of Turin, Turin, Italy
Search for more papers by this authorM. Sequi STAT D
Department of Public Health, Laboratory for Mother and Child Health, “Mario Negri” Pharmacological Research Institute, Milan, Italy
Search for more papers by this authorE. Bignamini MD
Pulmonology Unit, Regina Margherita University Children's Hospital, Turin, Italy
Search for more papers by this authorE. Capello MD
Department of Anesthesiology and Intensive Care Medicine, San Giovanni Battista-Molinette Hospital, University of Turin, Turin, Italy
Search for more papers by this authorR. Cutrera MD
Respiratory Unit, Bambino Gesu' Children's Research Hospital, Rome, Italy
Search for more papers by this authorG. Ottonello MD
Anesthesiology and Intensive Care Medicine Unit, G. Gaslini Institute, Genoa, Italy
Search for more papers by this authorV.M. Ranieri MD
Department of Anesthesiology and Intensive Care Medicine, San Giovanni Battista-Molinette Hospital, University of Turin, Turin, Italy
Search for more papers by this authorI. Salvo MD
Department of Anesthesiology and Intensive Care, Vittore Buzzi Children's Hospital, Milan, Italy
Search for more papers by this authorR. Testa
Intensive Care Unit, Santobono Hospital, Naples, Italy
Search for more papers by this authorA. Wolfler MD
Department of Anesthesiology and Intensive Care, Vittore Buzzi Children's Hospital, Milan, Italy
Search for more papers by this authorCorresponding Author
M. Bonati MD
Department of Public Health, Laboratory for Mother and Child Health, “Mario Negri” Pharmacological Research Institute, Milan, Italy
Head of Department of Public Health and of the Laboratory for Mother and Child Health “Mario Negri” Pharmacological Research Institute Via Giuseppe La Masa 19, 20156 Milan, Italy.Search for more papers by this authoron behalf of the “LTV Pediatric Italian Network”
“LTV Pediatric Italian Network”: Anna Costantino, Alessandria; Raffaella Pagni, Ancona; Anna Maria Miorelli, Arco; Paolo Castaldi, Cagliari; Mariano Cabras, Carbonia; Bruno Dengo, Castelfranco Veneto; Augusto Biasini, Cesena; Francesco Morandi, Erba; Carlo Minetti, Giancarlo Ottonello, Genova; Paolo Banfi, Maurizio Bonati, Edoardo Calderini, Edi Prandi, Ida Salvo, Marco Sequi, Andrea Wolfler, Marco Zucconi, Milano; Giuseppe Fiorentino, Antonio Maddalena, Raffaele Testa, Napoli; Grazia Crescimanno, Anna Guddo, Palermo; Livio Carnevale, Pavia; Andrea Vianello, Padova; Giancarlo Piccinini, Ravenna; Valter Bottari, Reggio Emilia; Maurizio Corbari, Renato Cutrera, Martino Pavone, Roma; Giacomo Berta, Elisabetta Bignamini, Elena Capello, Lorenzo Del Sorbo, Cesare Gregoretti, Maria Maspoli, Fabrizio Racca, Marco V. Ranieri, Torino; Antonio Peratoner, Udine; Monica Benedetti, Verona.
Search for more papers by this authorAbstract
Background
Improved technology, as well as professional and parental awareness, enable many ventilator-dependent children to live at home. However, the profile of this growing population, the quality and adequacy of home care, and patients' needs still require thorough assessment.
Objectives
To define the characteristics of Italian children receiving long-term home mechanical ventilation (HMV) in Italy.
Methods
A detailed questionnaire was sent to 302 National Health Service hospitals potentially involved in the care of HVM in children (aged <17 years). Information was collected on patient characteristics, type of ventilation, and home respiratory care.
Results
A total of 362 HMV children was identified. The prevalence was 4.2 per 100,000 (95% CI: 3.8–4.6), median age was 8 years (interquartile range 4–14), median age at starting mechanical ventilation was 4 years (1–11), and 56% were male. The most frequent diagnostic categories were neuromuscular disorders (49%), lung and upper respiratory tract diseases (18%), hypoxic (ischemic) encephalopathy (13%), and abnormal ventilation control (12%). Medical professionals with nurses (for 62% of children) and physiotherapists (20%) participated in the patients' discharge from hospital, though parents were the primary care giver, and in 47% of cases, the sole care giver. Invasive ventilation was used in 41% and was significantly related to young age, southern regional residence, longer time spent under mechanical ventilation, neuromuscular disorders, or hypoxic (ischemic) encephalopathy.
Conclusions
Care and technical assistance of long-term HMV children need assessment, planning, and resources. A wide variability in pattern of HMV was found throughout Italy. An Italian national ventilation program, as well as a national registry, could be useful in improving the care of these often critically ill children. Pediatr. Pulmonol. 2011; 46:566–572. © 2011 Wiley-Liss, Inc.
REFERENCES
- 1 Murphy J. Medically stable children in PICU: better at home. Paediatr Nurs 2008; 20: 14–16.
- 2 Herouvin L. From hospital to home for technology-dependent children. Paediatr Nurs 2007; 19: 34.
- 3 Lloyd-Owen SJ, Donaldson GC, Ambrosino N, et al. Patterns of home mechanical ventilation use in Europe: results from the Eurovent survey. Eur Respir J 2005; 25: 1025–1031.
- 4 Dhillon J, Frewen T, Singh N, Speechley K. Chronic mechanical dependent children in Canada. J Paediatr Child Health 1996; 1: 111–116.
- 5 Carnevale FA, Alexander E, Davis M, Rennick J, Troini R. Daily living with distress and enrichment: the moral experience of famiglie with ventilator-assisted children at home. Pediatrics 2006; 117: e48–e60.
- 6 Bertrand P, Fehlmann E, Lizama M, Holmgren N, Silva M, Sánchez I. Home ventilatory assistance in Chilean children: 12 years' experience. Arch Bronconeumol 2006; 42: 165–170.
- 7 Lang M, Schwering MS, Schöber JG. Practical experiences with home ventilation in childhood [Article in German]. Med Klin (Munich) 1995; 90: 52–56.
- 8 Fauroux B, Sardet A, Foret D. Home treatment for chronic respiratory failure in children: a prospective study. Eur Respir J 1995; 8: 2062–2066.
- 9 Fauroux B, Boffa C, Desguerre I, Estournet B, Trang H. Long-term noninvasive mechanical ventilation for children at home: a national survey. Pediatr Pulmonol 2003; 35: 119–125.
- 10 Appierto L, Cori M, Bianchi R, et al. Home care for chronic respiratory failure in children: 15 years experience. Paediatr Anaesth 2002; 12: 345–350.
- 11 Ottonello G, Ferrari I, Pirroddi IM, et al. Home mechanical ventilation in children: retrospective survey of a pediatric population. Pediatr Int 2007; 49: 801–805.
- 12 Sakakihara Y, Yamanaka T, Kajii M, Kamoshita S. Long-term ventilator-assisted children in Japan: a national survey. Acta Paediatr Jpn 1996; 38: 137–142.
- 13 Edwards EA, Hsiao K, Nixon GM. Paediatric home ventilatory support: the Auckland experience. J Paediatr Child Health 2005; 41: 652–658.
- 14 Kamm M, Burger R, Rimensberger P, Knoblauch A, Hammer J. Survey of children supported by long-term mechanical ventilation in Switzerland. Swiss Med Wkly 2001; 131: 261–266.
- 15
Goorhuis JF,
Cobben NAM,
Van Der Voort E,
Kampelmacher MJ.
Structure and organization of the Center for Home Mechanical Ventilation for children in the Netherlands.
Tijdschr Kindergeneeskund
2009;
77:
99–103.
10.1007/BF03086370 Google Scholar
- 16 Oktem S, Ersu R, Uyan ZS, et al. Home ventilation for children with chronic respiratory failure in Istanbul. Respiration 2008; 76: 76–81.
- 17 Robinson RO. Ventilator dependency in the United Kingdom. Arch Dis Child 1990; 65: 1235–1236.
- 18 Jardine E, O'Toole M, Paton JY, Wallis C. Current status of long term ventilation of children in the United Kingdom: questionnaire survey. Br Med J 1999; 318: 295–299.
- 19 Edwards EA, O'Toole M, Wallis C. Sending children home on tracheostomy dependent ventilation: pitfalls and outcomes. Arch Dis Child 2004; 89: 251–255.
- 20 Goldberg AI, Frownfelter D. The ventilator-assisted individuals study. Chest 1990; 98: 428–433.
- 21 Gowans M, Keenan HT, Bratton SL. The population prevalence of children receiving invasive home ventilation in Utah. Pediatr Pulmonol 2007; 42: 231–236.
- 22 Graham RJ, Fleegler EW, Robinson WM. Chronic ventilator need in the community: a 2005 pediatric census of Massachusetts. Pediatrics 2007; 119: e1280–e1287.
- 23 Bonati M, Campi R. What can we do to improve child health in Southern Italy? PLoS Med 2005; 2: e250.
- 24 Bach JR, Rajaraman R, Ballanger F, Tzeng AC, Ishikawa Y, Kulessa R, et al. Neuromuscular ventilatory insufficiency: effect of home mechanical ventilator use vs oxygen therapy on pneumonia and hospitalization rates. Am J Phys Med Rehabil 1998; 77: 8–19.
- 25 Tzeng AC, Bach JR. Prevention of pulmonary morbidity for patients with neuromuscular disease. Chest 2000; 118: 1390–1396.
- 26 Gomez-Merino E, Bach JR. Duchenne muscolar dystrophy: prolongation of life by non-invasive ventilation and mechanically assisted coughing. Am J Phys Med Rehabil 2002; 81: 411–415.
- 27 Simonds AK, Ward S, Heather S, Bush A, Muntoni F. Outcome of paediatric domiciliary mask ventilation in neuromuscular and skeletal disease. Eur Resp J 2000; 16: 476–481.
- 28 Sritippayawan S, Kun SS, Keens TG, Ward SL. Initiation of home mechanical ventilation in children with neuromuscular diseases. J Pediatr 2003; 142: 481–485.
- 29 Mehta S, Hill NS. State of the art: non-invasive ventilation. Am J Respir Crit Care Med 2001; 163: 540–577.
- 30 Make BJ, Hill NS, Goldberg AI, Bach JR, Criner GJ, Dunne PE, Gilmartin ME, Heffner JE, Kacmarek R, Keens TG, McInturff S, O'Donohue WJ, Jr., Oppenheimer EA, Robert D. Mechanical ventilation beyond the intensive care unit. Report of a consensus conference of the American College of Chest Physicians. Chest 1998; 113: 289S–344S.
- 31 The Thoracic Society of Australia, New Zealand. Ventilatory support at home for children. A consensus statement for the Australasian paediatric respiratory group. 2008: http://www.thoracic.org.au/documents/papers/aprghomeventilationguideline.pdf.
- 32 Katz S, Selvadurai H, Keilty K, Mitchell M, MacLusky I. Outcome of non-invasive positive pressure ventilation in paediatric neuromuscular disease. Arch Dis Child 2004; 89: 121–124.
- 33 Wang CH, Finkel RS, Bertini ES, Schroth M, Simonds A, Wong B, Aloysius A, Morrison L, Main M, Crawford TO, Trela A. Participants of the International Conference on SMA Standard of Care. Consensus statement for standard of care in spinal muscular atrophy. J Child Neurol 2007; 22: 1027–1049.
- 34 Tobin B. Editorial overview: is the use of invasive ventilation is appropriate in children with genetically proven muscular atrophy type I? Paediatr Respir Rev 2008; 9: 55–56.
- 35 Bach JR. The use of mechanical ventilation is appropriate in children with genetically proven muscular atrophy type I: the motion for. Paediatr Respir Rev 2008; 9: 45–50.
- 36 Ryan MM. The use of invasive ventilation is appropriate in children with genetically proven muscular atrophy type I: the motion against. Paediatr Respir Rev 2008; 9: 51–54.
- 37 Simonds AK. Respiratory support for the severely handicapped child with neuromuscular disease: ethics and practicality. Semin Respir Crit Care Med 2007; 28: 342–354.
- 38 Profit J, McCormick MC, Escobar GJ, Richardson DK, Zheng Z, Coleman-Phox K, Roberts R, Zupancic JAF. Neonatal intensive care unit census influences discharge of moderately preterm infants. Pediatrics 2007; 119: 314–319.
- 39 Sherman JM, Davis S, Albamonte-Petrick S, Chatburn RL, Fitton C, Green C, et al. Care of the child with chronic tracheostomy. Am J Respir Crit Care Med 2000; 161: 297–308.
- 40 Jardine E, Wallis C. Core guidelines for the discharge home of the child on long-term assisted ventilation in the United Kingdom. UK Working Party on Paediatric Long Term Ventilation. Thorax 1998; 53: 762–767.
- 41 Perrin J, Erenberg G, LaCamera R. Guidelines for home care of infants, children, and adolescents with chronic disease. American Academy of Pediatrics Committee on Children with Disabilities. Pediatrics 1995; 96: 161–164.
- 42 Wang KW, Barnard A. Caregivers' experiences at home with a ventilator-dependent child. Qual Health Res 2008; 18: 501–508.