Section 4: Home monitoring and follow-up of home-ventilated children

References

• Simonds AK, Ward S, Heather S, Bush A, Muntoni F. Outcome of paediatric domiciliary mask ventilation in neuromuscular and skeletal disease. Eur Respir J. 2000;16(3):476–481.
   Google Scholar
• Graham RJ, Fleegler EW, Robinson WM. Chronic Ventilator Need in the Community: A 2005 Pediatric Census of Massachusetts. Pediatrics. 2007;119(6):e1280–e1287.
   Google Scholar
• Goodwin S, Smith H, Langton Hewer S. Increasing prevalence of domiciliary ventilation: changes in service demand and provision in the South West of the UK. Eur J Pediatr. 2011;170(9):1187–1192.
   Google Scholar
• Paulides FM, Plotz FB, Verweij-van den Oudenrijn LP, van Gestel JP, Kampelmacher MJ . Thirty years of home mechanical ventilation in children: escalating need for pediatric intensive care beds. Intensive Care Med. 2012;38(5):847–852.
   Google Scholar
• Com G, Kuo DZ, Bauer ML. Outcomes of Children Treated With Tracheostomy and Positive-Pressure Ventilation at Home. Clin Pediatr (Phila). 2013;52(1):54–61.
   Google Scholar
• Amin R, Sayal P, Syed F, Chaves A, Moraes TJ, MacLusky I. Pediatric long-term HMV: Twenty years of follow-up from one Canadian center. Pediatr Pulmonol. 2014;49(8):816–824.
   Web of Science ®Google Scholar
• Kherani T, Sayal A, Al-Saleh S, Sayal P, Amin R. A comparison of invasive and noninvasive ventilation in children less than 1 year of age: A long-term follow-up study. Pediatric Pulmonol. 2016;51:189–195.
   Google Scholar
• Wallis C, Paton JY, Beaton S, Jardine E. Children on long-term ventilatory support: 10 years of progress. Arch Dis Child. 2011;96(11):998–1002.
   PubMed Web of Science ®Google Scholar
• Appierto L, Cori M, Bianchi R. Home care for chronic respiratory failure in children: 15 years experience. Paediatr Anaesth. 2002;12(4):345–350.
   PubMedGoogle Scholar
• Canlas-Yamsuan M, Sanchez I, Kesselman M, Chernick V. Morbidity and mortality patterns of ventilator-dependent children in a home care program. Clin Pediatr (Phila). 1993;32(12):706–713.
   PubMedGoogle Scholar
• Cristea AI, Carroll AE, Davis SD, Swigonski NL, Ackerman VL. Outcomes of children with severe bronchopulmonary dysplasia who were ventilator dependent at home. Pediatrics 2013;132(3):E727–E734.
   Web of Science ®Google Scholar
• Edwards EA, O'Toole M, Wallis C. Sending children home on tracheostomy dependent ventilation: pitfalls and outcomes. Arch Dis Child. 2004;89(3):251–255.
   PubMedGoogle Scholar
• Edwards JD, Kun SS, Keens TG . Outcomes and causes of death in children on home mechanical ventilation via tracheostomy: an institutional and literature review. J Pediatr. 2010;157(6):955–959 e952.
   Google Scholar
• Fields AI, Coble DH, Pollack MM, Kaufman J. Outcome of home care for technology-dependent children: success of an independent, community-based case management model. Pediatr Pulmonol. 1991;11(4):310–317.
   Google Scholar
• Frates RC, Splaingard ML, Smith EO, Harrison GM . Outcome of home mechanical ventilation in children. J Pediatr. 1985;106(5):850–856.
   PubMedGoogle Scholar
• Gilgoff RL, Gilgoff IS . Long-term follow-up of home mechanical ventilation in young children with spinal cord injury and neuromuscular conditions. J Pediatr. 2003;142(5):476–480.
   Google Scholar
• Gowans M, Keenan HT, Bratton SL. The population prevalence of children receiving invasive home ventilation in Utah. Pediatr Pulmonol. 2007;42(3):231–236.
   Google Scholar
• Hsia SH, Lin JJ, Huang IA, Wu CT. Outcome of long-term mechanical ventilation support in children. Pediatr Neonatol. 2012;53(5):304–308.
   Google Scholar
• Iannaccone ST, Guilfoile T. Long-term Mechanical Ventilation In Infants With Neuromuscular Disease. J Child Neurol. 1988;3(1):30–32.
   Google Scholar
• Marcus CL, Jansen MT, Poulsen MK, et al. Medical and psychosocial outcome of children with congenital central hypoventilation syndrome. J Pediatr. 1991;119(6):888–895.
   PubMed Web of Science ®Google Scholar
• O'Brien JE, Dumas HM, Haley SM, et al. Clinical Findings and Resource Use of Infants and Toddlers Dependent on Oxygen and Ventilators. Clin Pediatr (Phila). 2002;41(3):155–162.
   PubMedGoogle Scholar
• Oktem S, Ersu R, Uyan ZS, et al. Home Ventilation for Children with Chronic Respiratory Failure in Istanbul. Respiration. 2008;76(1):76–81.
   Google Scholar
• Oren J, Keloly DH, Shannon DC. Long-term follow-up of children with congenital central hypoventilation syndrome. Pediatrics. 1987;80(3):375–380.
   PubMedGoogle Scholar
• Pekcan S, Aslan AT, Kiper N, et al. HMV: outcomes according to remoteness from health center and different family education levels. Turk J Pediatr. 2010;52(3):267–273.
   Google Scholar
• Reiter K, Pernath N, Pagel P, et al . Risk Factors for Morbidity and Mortality in Pediatric home mechanical ventilation. Clin Pediatr (Phila). 2011;50(3):237–243.
   Google Scholar
• Robinson RO. Ventilator dependency in the United Kingdom. Arch Dis Child. 1990;65(11):1235–1236.
   Google Scholar
• Sasaki M, Sugai K, Fukumizu M, Hanaoka S, Kaga M. Mechanical ventilation care in severe childhood neurological disorders. Brain Develop. 2001;23(8):796–800.
   Google Scholar
• Sovtic A, Minic P, Vukcevic M, Markovic-Sovtic G, Rodic M, Gajic M. HMV in children is feasible in developing countries. Pediatrics Int. 2012;54(5):676–681.
   Google Scholar
• Tibballs J, Henning R, Robertson CF, et al. A home respiratory support programme for children by parents and layperson carers. J Paediatr Child Health. 2010;46(1-2):57–62.
   Google Scholar
• Wheeler WB, Maguire EL, Kurachek SC, Lobas JG, Fugate JH, McNamara JJ. Chronic respiratory failure of infancy and childhood: clinical outcomes based on underlying etiology. Pediatr Pulmonol. 1994;17(1):1–5.
   PubMedGoogle Scholar
• Cancelinha C, Madureira N, Mação P, et al. Long-term ventilation in children: Ten years later. Rev Port Pneumol (2006). 2015;21(1):16–21.
   Google Scholar
• Han YJ, Park JD, Lee B, et al. HMV in childhood-onset hereditary neuromuscular diseases: 13 years’ experience at a single center in Korea. PLoS One. 2015;10(3):e0122346.
   Google Scholar
• Chatwin M, Heather S, Hanak A, Polkey MI, Simonds AK. Analysis of home support and ventilator malfunction in 1,211 ventilator-dependent patients. Eur Respir J. 2010;35(2):310–316.
   Google Scholar
• Srinivasan S, Doty SM, White TR, et al. Frequency, causes, and outcome of home ventilator failure. Chest. 1998;114(5):1363–1367.
   Google Scholar
• 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(9):762–767.
   Google Scholar
• Wallgren-Pettersson C, Bushby K, Mellies U, Simonds A. 117th ENMC Workshop: Ventilatory Support in Congenital Neuromuscular Disorders—Congenital Myopathies, Congenital Muscular Dystrophies, Congenital Myotonic Dystrophy and SMA (II) 4-6 April 2003, Naarden, The Netherlands. 2004/01/01/.
   Google Scholar
• Kohorst J, Blakely P, Dockter C, Pruit W. and the Respiratory home care focus g. Long-Term Invasive Mechanical Ventilation in the Home - 2007 Revision & Update. AARC Clinical Practice Guideline. Respir Care. 2007;52(1):1056–1062.
   Google Scholar
• Gonzalez Cortes R, Bustinza Arriortua A, Pons Odena M, et al. Domiciliary mechanical ventilation in children: a Spanish multicentre study. [Article in Spanish]. An Pediatr (Barc). 2013;78(4):227–233.
   Google Scholar
• Sherman JM, Davis S, Albamonte-Petrick S, et al. Care of the Child with a Chronic Tracheostomy. Official Statement of the American Thoracic Society. Am J Respir Crit Care Med. 2000;161(1):297–308.
   Google Scholar
• Make BJ, Hill NS, Goldberg AI, et al. Mechanical ventilation beyond the intensive care unit. Report of a consensus conference of the American College of Chest Physicians. Chest. 1998;113(5):289S–344S.
   Google Scholar
• Statement Ac. Respiratory Care of the Patient with Duchenne Muscular Dystrophy. Am J Respir Crit Care Med. 2004;170(4):456–465.
   Google Scholar
• Panitch HB. Children Dependent on Respiratory Technology. Kendig & Chernick's Disorders of the Respiratory Tract in Children (Eighth Edition). Philadelphia, PA: W.B. Saunders; 2012: 261–271.
   Google Scholar
• Stick SM, Wilson A, Panitch HB. Home Ventilation and Respiratory Support. In: Taussig LM, Landau LI, eds. Pediatric Respiratory Medicine. Vol Second Edition. Philadelphia, PA: Mosby Elsevier; 2008: 295–303.
   Google Scholar
• Racca F, Berta G, Sequi M, et al. Long-term home ventilation of children in Italy: a national survey. Pediatr Pulmonol. 2011;46(6):566–572.
   Google Scholar
• Warburton D, Stark AR, Taeusch HW. Apnea monitor failure in infants with upper airway obstruction. Pediatrics. 1977;60(5):742–744.
   Google Scholar
• Lawless ST. Crying wolf: false alarms in a pediatric intensive care unit. Crit Care Med. 1994;22(6):981–985.
   Google Scholar
• Gelinas JF, Davis GM, Arlegui C, Cote A. Prolonged, documented home-monitoring of oxygenation in infants and children. Pediatr Pulmonol. 2008;43(3):288–296.
   Google Scholar
• Lowery WS. Ventilator-disconnect and death: a case study and a safety device. Respir Care. 2010;55(6):774–776.
   Google Scholar
• Kun SS, Nakamura CT, Ripka JF, Davidson Ward SL, Keens TG. Home ventilator low-pressure alarms fail to detect accidental decannulation with pediatric tracheostomy tubes. Chest. 2001;119(2):562–564.
   Google Scholar
• AAP. American Academy of Pediatrics: Committee on Fetus and Newborn Apnea, Sudden Infant Death Syndrome, and Home Monitoring. Pediatrics. 2003;111(4):914–917.
   Google Scholar
• Ahmann E, Wulff L, Meny RG. Home apnea monitoring and disruptions in family life: a multidimensional controlled study. Am J Public Health. 1992;82(5):719–722.
   Google Scholar
• Williams PD, Press A, Williams AR, et al. Fatigue in mothers of infants discharged to the home on apnea monitors. Appl Nurs Res. 1999;12(2):69–77. 53.
   Google Scholar
• Meny RG, Blackmon L, Fleischmann D, Gutberlet R, Naumburg E. Sudden infant death and home monitors. Am J Dis Child. 1988;142(10):1037–1040.
   Google Scholar
• Meny RG, Carroll JL, Carbone MT, Kelly DH. Cardiorespiratory Recordings from Infants Dying Suddenly and Unexpectedly at Home. Pediatrics. 1994;93(1):44–49.
   Google Scholar
• Poets CF, Stebbens VA, Richard D, Southall DP. Prolonged episodes of hypoxemia in preterm infants undetectable by cardiorespiratory monitors. Pediatrics. 1995;95(6):860–863.
   PubMed Web of Science ®Google Scholar
• Silvestri JM, Hufford DR, Durham J, et al . Assessment of Compliance with Home Cardiorespiratory Monitoring in Infants at Risk of sudden infant death syndrome. Collaborative Home Infant Monitoring Evaluation (CHIME). J Pediatr. 1995;127(3):384–388.
   Google Scholar
• Weese-Mayer DE, Brouillette RT, Morrow AS, Conway LP, Klemka-Walden LM, Hunt CE. Assessing validity of infant monitor alarms with event recording. J Pediatr. 1989;115(5):702–708.
   Google Scholar
• Weese-Mayer DE, Silvestri JM . Documented monitoring: an alarming turn of events. Clin Perinatol. 1992;19(4):891–906.
   Google Scholar
• Gibson E, Spinner S, Cullen JA, Wrobel HA, Spitzer AR. Documented home apnea monitoring: effect on compliance, duration of monitoring, and validation of alarm reporting. Clin Pediatr (Phila). 1996;35(10):505–513.
   Google Scholar
• ATS. Standards and indications for cardiorespiratory sleep studies in children. Am J Respir Crit Care Med. 1996;153(2):866–878.
   PubMed Web of Science ®Google Scholar
• Kun SS, Edwards JD, Davidson Ward SL, Keens TG. Hospital readmissions for newly discharged pediatric HMV patients. Pediatr Pulmonol. 2012;47(4):409–414.
   Google Scholar
• Tan E, Nixon GM, Edwards EA. Sleep studies frequently lead to changes in respiratory support in children. J Paediatr Child Health. 2007;43(7-8):560–563.
   Google Scholar
• Paiva R, Krivec U, Aubertin G, Cohen E, Clément A, Fauroux B. Carbon dioxide monitoring during long-term noninvasive respiratory support in children. Intensive Care Med. 2009;35(6):1068–1074.
   Google Scholar
• Stores G, Crawford C, Selman J, Wiggs L. Home polysomnography norms for children. Technol Health Care. 1998;6(4):231–236.
   Google Scholar
• Felemban O, Leroux K, Aubertin G, et al. Value of Gas Exchange Recording at Home in Children Receiving Non-Invasive Ventilation. Pediatr Pulmonol. 2011;46(8):802–808.
   Google Scholar
• 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(2):119–125.
   Google Scholar
• Edwards EA, Hsiao K, Nixon GM. Paediatric home ventilatory support: the Auckland experience. J Paediatr Child Health. 2005;41(12):652–658.
   Google Scholar
• Miyasaka K, Suzuki Y, Sakai H, Kondo Y. Interactive communication in high-technology home care: videophones for pediatric ventilatory care. Pediatrics 1997;99(1):E1
   Google Scholar
• Zhou J, Liu D-B, Zhong J-W, et al. Feasibility of a remote monitoring system for home-based non-invasive positive pressure ventilation of children and infants. Int J Pediatr Otorhinolaryngol. 2012;76(12):1737–1740.
   Google Scholar
• Casavant DW, McManus ML, Parsons SK, Zurakowski D, Graham RJ. Trial of telemedicine for patients on home ventilator support: feasibility, confidence in clinical management and use in medical decision-making. J Telemed Telecare. 2014;20(8):441–449.
   Google Scholar
• Farmer A, Gibson OJ, Tarassenko L, Neil A. A systematic review of telemedicine interventions to support blood glucose self-monitoring in diabetes. Diabet Med. 2005;22(10):1372–1378.
   Google Scholar
• Paré G, Jaana M, Sicotte C. Systematic review of home telemonitoring for chronic diseases: the evidence base. J Am Med Inform Assoc. 2007;14(3):269–277.
   PubMed Web of Science ®Google Scholar
• Segrelles Calvo G, Gómez-Suárez C, Soriano JB, et al. A home telehealth program for patients with severe COPD: The PROMETE study. Respir Med. 2014;108(3):453–462.
   PubMed Web of Science ®Google Scholar
• Hazenberg A, Kerstjens HAM, Prins SCL, Vermeulen KM, Wijkstra PJ. Initiation of HMV at home: a randomised controlled trial of efficacy, feasibility and costs. Resp Med. 2014;108(9):1387–1395.
   PubMed Web of Science ®Google Scholar
• Jakobsen AS, Laursen LC, Rydahl-Hansen S, et al. Home-based telehealth hospitalization for exacerbation of chronic obstructive pulmonary disease: findings from “the virtual hospital” trial. Telemed e-Health. 2015;21(5):364–373.
   Google Scholar
• McCrossan B, Morgan G, Grant B, et al. A randomised trial of a remote home support programme for infants with major congenital heart disease. Heart. 2012;98(20):1523–1528.
   Google Scholar
• Zamarrón C, Morete E, González F. Telemedicine system for the care of patients with neuromuscular disease and chronic respiratory failure. Aoms. 2014;5 (5):1047–1051.
   Google Scholar
• Vitacca M, Assoni G, Pizzocaro P, et al. A pilot study of nurse-led, home monitoring for patients with chronic respiratory failure and with mechanical ventilation assistance. J Telemed Telecare. 2006;12(7):337–342.
   Google Scholar
• Vitacca M, Bianchi L, Guerra A, et al. Tele-assistance in chronic respiratory failure patients: a randomised clinical trial. Eur Respir J. 2009;33(2):411–418.
   PubMed Web of Science ®Google Scholar
• Maiolo C, Mohamed EI, Fiorani CM, De Lorenzo A. Home telemonitoring for patients with severe respiratory illness: the Italian experience. J Telemed Telecare. 2003;9(2):67–71.
   Google Scholar
• Garuti G, Bagatti S, Verucchi E, et al. Pulmonary rehabilitation at home guided by telemonitoring and access to healthcare facilities for respiratory complications in patients with neuromuscular disease. Eur J Phys Rehabil Med. 2013;49(1):51–57.
   PubMed Web of Science ®Google Scholar
• Pinto A, Almeida JP, Pinto S, Pereira J, Oliveira AG, de Carvalho M. Home telemonitoring of non-invasive ventilation decreases healthcare utilisation in a prospective controlled trial of patients with amyotrophic lateral sclerosis. J Neurol Neurosurg Psychiatry. 2010;81(11):1238–1242.
   PubMed Web of Science ®Google Scholar
• de Almeida JP, Pinto AC, Pereira J, Pinto S, de Carvalho M. Implementation of a wireless device for real-time telemedical assistance of home-ventilated amyotrophic lateral sclerosis patients: a feasibility study. Telemed J E Health. 2010;16(8):883–888.
   Google Scholar
• Seifert GJ, Hedin DS, Dahlstrom RJ, Havey GD. Telemedicine enabled remote critical care ventilator. Paper presented at: Engineering in Medicine and Biology Society (EMBC), 2010 Annual International Conference of the IEEE; 2010/08/31/, 2010.
   Google Scholar
• Jabłoński I. Wearable interrupter module for home-based applications in a telemedical system dedicated to respiratory mechanics measurements. IEEE Trans Biomed Eng. 2014;58(3):785–789.
   Google Scholar
• Tura A, Santini P, Longo D, Quareni L. A telemedicine instrument for home monitoring of patients with chronic respiratory diseases. Ann Ist Super Sanita. 2007;43(1):101–109.
   PubMedGoogle Scholar