Transition von langzeitbeatmeten Kindern in die Erwachsenenmedizin

Zusammenfassung

Durch die Fortschritte in der Langzeitbeatmung erreichen heutzutage viele Kinder mit chronisch respiratorischer Insuffizienz das Erwachsenenalter. Die medizinische Betreuung dieser Kinder muss deshalb von den Kinderärzten:innen zu den Erwachsenenärzten:innen übergehen. Dieser Prozess heißt „Transition“. Die Transition in die Erwachsenenmedizin dient v.a. der Förderung der Autonomie der heranwachsenden Jugendlichen und trägt den mit zunehmendem Alter eintretenden Änderung der Krankheitsbilder und der auftretenden Koerkrankungen Rechnung. Transition schafft aber auch Verunsicherung bei den Patienten und deren Eltern. Sie birgt die Gefahr des Verlustes des „Medical Home“ und sogar den Verlust der vollständigen medizinischen Versorgung. Gute strukturelle Voraussetzungen zur Bewältigung sind notwendig, genauso wie professionelle Vorbereitung der Patienten auf die Transition, durch Coaching der Patienten während der Umsetzung der Transition sowie eine formalisierte strukturierte Übergabe zwischen den Behandler:innen. Dieser Artikel zeigt auf, wie gute Transition funktionieren kann mit dem Fokus auf langzeitbeatmete Kinder.

Abstract

Through advances in long-term ventilation, the number of children with chronic respiratory insufficiency reaching adult age has increased tremendously. Therefore, transition of children from pediatric to adult care has become inevitable. Transition is necessary for medicolegal reasons, to increase autonomy of the young patients and because of change in the disease as a result of increasing age. Transition bears the risks of uncertainty of patients and parents, loss of the medical home or even loss of complete medical care. Good structural conditions, professional preparation of patient and parents, a comprehensive formalized transfer and patient coaching are prerequisites for a successful professional transition. This article discusses issues of transition with focus on long-term ventilated children.

Schlüsselwörter

Langzeitbeatmung - außerklinische Beatmung - Kinder - Transition - neuromuskuläre Erkrankungen

Keywords

long term ventilation - home mechanical ventilation - children - transition - neuromuscular diseases

• Literatur

• 1 Windisch W, Dreher M, Geiseler J. et al. Guidelines for Non-Invasive and Invasive Home Mechanical Ventilation for Treatment of Chronic Respiratory Failure – Update 2017. Pneumologie 2017; 71: 722-795
• 2 Kieny P, Chollet S, Delalande P. et al. Evolution of life expectancy of patients with Duchenne muscular dystrophy at AFM Yolaine de Kepper centre between 1981 and 2011. Ann Phys Rehabil Med 2013; 56: 443-454
• 3 Fauroux B, Cutrera R. Editorial: Pediatric Long-Term Non-invasive Ventilation. Front Pediatr 2021; 9: 654578
• 4 Weiss S, Van Egmond-Fröhlich A, Hofer N. et al. Long-Term Respiratory Support for Children and Adolescents in Austria: A National Survey. Klin Padiatr 2016; 228: 42-46
• 5 Praud J-P. Long-Term Non-invasive Ventilation in Children: Current Use, Indications, and Contraindications. Front Pediatr 2020; 8: 584334
• 6 Basa M, Minic P, Rodic M. et al. Evolution of Pediatric Home Mechanical Ventilation Program in Serbia-What Has Changed in the Last Decade. Front Pediatr 2020; 8: 261
• 7 Fauroux B, Khirani S, Griffon L. et al. Non-invasive Ventilation in Children With Neuromuscular Disease. Front Pediatr 2020; 8: 482
• 8 Amin R, Sayal P, Syed F. et al. Pediatric long-term home mechanical ventilation: twenty years of follow-up from one Canadian center. Pediatr Pulmonol 2014; 49: 816-824
• 9 Chau S-K, Yung AW-Y, Lee S-L. Long-Term Management for Ventilator-Assisted Children in Hong Kong: 2 Decades’ Experience. Respir Care 2017; 62: 54-64
• 10 Rose L, Nonoyama M, Rezaie S. et al. Psychological wellbeing, health related quality of life and memories of intensive care and a specialised weaning centre reported by survivors of prolonged mechanical ventilation. Intensive Crit Care Nurs 2014; 30: 145-151
• 11 Schwarz SB, Lepper PM, Schönhofer B. Home Mechanical Ventilation. Pneumologie 2022; 76: 395-396
• 12 King AC. Long-term home mechanical ventilation in the United States. Respir Care 2012; 57: 921-932
• 13 Edwards JD, Houtrow AJ, Lucas AR. et al. Children and Young Adults Who Received Tracheostomies or Were Initiated on Long-Term Ventilation in PICUs. Pediatr Crit Care Med 2016; 17: e324-e334
• 14 Fitzgerald DA, Follett J, Van Asperen PP. Assessing and managing lung disease and sleep disordered breathing in children with cerebral palsy. Paediatr Respir Rev 2009; 10: 18-24
• 15 Cristea AI, Carroll AE, Davis SD. et al. Outcomes of children with severe bronchopulmonary dysplasia who were ventilator dependent at home. Pediatrics 2013; 132: e727-734
• 16 Mastouri M, Amaddeo A, Griffon L. et al. Weaning from long term continuous positive airway pressure or noninvasive ventilation in children. Pediatr Pulmonol 2017; 52: 1349-1354
• 17 Cm M, Rj A, Df W. et al. Long-term ventilation in children: longitudinal trends and outcomes. Archives of disease in childhood 2013; 98
• 18 Schönhofer B, Geiseler J, Dellweg D. et al. Prolonged Weaning – S2k-Guideline Published by the German Respiratory Society. Pneumologie 2019; 73: 723-814
• 19 Veldhoen ES, Wijngaarde CA, Hulzebos EHJ. et al. Natural history of respiratory muscle strength in spinal muscular atrophy: a prospective national cohort study. Orphanet J Rare Dis 2022; 17: 70
• 20 Steindor M, Wagner CE, Bock C. et al. Home Noninvasive Ventilation in Pediatric Subjects With Neuromuscular Diseases: One Size Fits All. Respir Care 2021; 66: 410-415
• 21 Gomez-Merino E, Bach JR. Duchenne muscular dystrophy: prolongation of life by noninvasive ventilation and mechanically assisted coughing. Am J Phys Med Rehabil 2002; 81: 411-415
• 22 Wollinsky KH, Kutter B, Geiger PM. Long-term ventilation of patients with Duchenne muscular dystrophy: experiences at the Neuromuscular Centre Ulm. Acta Myol 2012; 31: 170-178
• 23 Wasilewska E, Małgorzewicz S, Sobierajska-Rek A. et al. Transition from Childhood to Adulthood in Patients with Duchenne Muscular Dystrophy. Medicina (Kaunas) 2020; 56: 426
• 24 Köhnlein T, Schwarz SB, Nagel S. et al. Home Non-Invasive Positive Pressure Ventilation in Chronic Obstructive Pulmonary Disease: Why, Who, and How?. Respiration 2022; 101: 709-716
• 25 S3-Leitlinie Transition von der Pädiatrie in die Erwachsenenmedizin. Accessed May 14, 2023 at: https://register.awmf.org/de/leitlinien/detail/186-001
• 26 Blum RW, Garell D, Hodgman CH. et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health 1993; 14: 570-576
• 27 Full article: Section 12: Transition from pediatric to adult care. Accessed November 22, 2022 at: https://www.tandfonline.com/doi/full/10.1080/24745332.2018.1494992
• 28 Onofri A, Broomfield A, Tan H-L. Transition to Adult Care in Children on Long-Term Ventilation. Front Pediatr 2020; 8: 548839
• 29 Drovetta M, Cramer E, Linafelter A. et al. Impact of Perceived Barriers on Patient Engagement and Attitudes towards Transition and Transfer. Children (Basel) 2022; 9: 1273
• 30 Bagatell N, Chan D, Rauch KK. et al. „Thrust into adulthood“: Transition experiences of young adults with cerebral palsy. Disabil Health J 2017; 10: 80-86
• 31 Sawyer SM, Drew S, Yeo MS. et al. Adolescents with a chronic condition: challenges living, challenges treating. Lancet 2007; 369: 1481-1489
• 32 Kapellen TM, Müther S, Schwandt A. et al. Transition to adult diabetes care in Germany-High risk for acute complications and declining metabolic control during the transition phase. Pediatr Diabetes 2018;
• 33 Akchurin OM, Melamed ML, Hashim BL. et al. Medication adherence in the transition of adolescent kidney transplant recipients to the adult care. Pediatr Transplant 2014; 18: 538-548
• 34 Björquist E, Nordmark E, Hallström I. Living in transition – experiences of health and well-being and the needs of adolescents with cerebral palsy. Child Care Health Dev 2015; 41: 258-265
• 35 Rose L, Fowler RA, Goldstein R. et al. Patient transitions relevant to individuals requiring ongoing ventilatory assistance: a Delphi study. Can Respir J 2014; 21: 287-292
• 36 White PH, Cooley WC. Transitions clinical report authoring group. et al. Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home. Pediatrics 2018; 142: e20182587
• 37 Kroppen D, Schwarz SB. Ambulante Kontrolle und Einleitung einer nichtinvasiven Langzeitbeatmung. Pneumologe 2021; 18: 20-26
• 38 Klingshirn H, Schwarz SB. Quality of Care in Home Mechanical Ventilation. Pneumologie 2022; 76: 397-403
• 39 American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians. et al. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 2011; 128: 182-200
• 40 American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians – American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002; 110: 1304-1306
• 41 Dale CM, Carbone S, Amin R. et al. A transition program to adult health services for teenagers receiving long-term home mechanical ventilation: A longitudinal qualitative study. Pediatr Pulmonol 2020; 55: 771-779
• 42 Fleischer M, Coskun B, Stolte B. et al. Essen transition model for neuromuscular diseases. Neurol Res Pract 2022; 4: 41
• 43 John AS, Jackson JL, Moons P. et al. Advances in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: A Practical Approach to Transition Program Design: A Scientific Statement From the American Heart Association. J Am Heart Assoc 2022; 11: e025278
• 44 Bennett DL, Towns SJ, Steinbeck KS. Smoothing the transition to adult care. Med J Aust 2005; 182: 373-374