Vol 15, No 1 (2021)
Review paper
Published online: 2021-02-26

open access

Page views 661
Article views/downloads 1312
Get Citation

Connect on Social Media

Connect on Social Media

Practical aspects of nursing care provided to patients diagnosed with amyotrophic lateral sclerosis receiving home mechanical ventilation

Katarzyna Butna1, Anna Pyszora1, Anna Adamczyk1, Małgorzata Krajnik1
Palliat Med Pract 2021;15(1):42-52.

Abstract

The article presents the practical aspects of home care provided to patients diagnosed with amyotrophic
lateral sclerosis (ALS) receiving mechanical ventilation. It discusses issues related to qualifying patients
diagnosed with ALS for mechanical ventilation, patients’ palliative care at home and education of caregivers.
The most important nursing problems facing caregivers and recommended approaches are discussed.
Attention is drawn to the role of nurses who provide palliative care to patients staying at home, particularly
to their important role in educating patients’ families.

Article available in PDF format

View PDF Download PDF file

References

  1. Adamczyk A. Stwardnienie zanikowe boczne. In: Ciałkowska-Rysz A, Dzierżanowski T. ed. Medycyna paliatywna. Termedia, Poznań 2019: 314–323.
  2. Maciejewski D, Wojnar-Gruszka K. Wentylacja mechaniczna — teoria i praktyka. Alfa-medica Press, Bielsko-Biała 2016: 320–350, 533–567, 584–594.
  3. Sancho J, Servera E, Bañuls P, et al. Predictors of need for noninvasive ventilation during respiratory tract infections in medically stable, non-ventilated subjects with amyotrophic lateral sclerosis. Respir Care. 2015; 60(4): 492–497.
  4. Dorst J, Ludolph AC. Non-invasive ventilation in amyotrophic lateral sclerosis. Ther Adv Neurol Disord. 2019; 12: 1756286419857040.
  5. Oskarsson B, Gendron TF, Staff NP. Amyotrophic Lateral Sclerosis: An Update for 2018. Mayo Clin Proc. 2018; 93(11): 1617–1628.
  6. Longinetti E, Fang F. Epidemiology of amyotrophic lateral sclerosis: an update of recent literature. Curr Opin Neurol. 2019; 32(5): 771–776.
  7. Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis: Drug, nutritional, and respiratory therapies (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2009; 73(24): 2134–2134.
  8. Andersen PM, Borasio GD, Dengler R, et al. EALSC Working Group. Good practice in the management of amyotrophic lateral sclerosis: clinical guidelines. An evidence-based review with good practice points. EALSC Working Group. Amyotroph Lateral Scler. 2007; 8(4): 195–213.
  9. Mirczak A. The role of a nurse in home care of mechanically ventilated patients. Nursing and Public Health. 2018; 8(1): 61–66.
  10. Rozporządzenie Ministra Zdrowia z dnia 10 lipca 2014 r. (Dz. U. 22 lipca 2014, pozycja 960).
  11. Rozporządzenie Ministra Zdrowia. http://prawo.sejm.gov.pl/isap.nsf/download.xsp/WDU20140000960/O/D20140960.pdf.
  12. Simonds AK. ERS Practical handbook of Noninvasive Ventilation, European Respiratory Society, 2015.
  13. Szkulmowski Z. Nieinwazyjna wentylacja mechaniczna w domu. Pol Med Paliat. 2004; 3(1): 39–43.
  14. Bishopp A, Oakes A, Antoine-Pitterson P, et al. The Preventative Effect of Hydrocolloid Dressings on Nasal Bridge Pressure Ulceration in Acute Non-Invasive Ventilation. Ulster Med J. 2019; 88(1): 17–20.
  15. Alqahtani JS, AlAhmari MD. Evidence based synthesis for prevention of noninvasive ventilation related facial pressure ulcers. Saudi Med J. 2018; 39(5): 443–452.
  16. Bambi S, Peris A, Esquinas AM. Pressure Ulcers Caused by Masks During Noninvasive Ventilation. Am J Crit Care. 2016; 25(1): 6.
  17. Cai JY, Zha ML, Chen HL. Use of a Hydrocolloid Dressing in the Prevention of Device-related Pressure Ulcers During Noninvasive Ventilation: A Meta-analysis of Randomized Controlled Trials. Wound Management & Prevention. 2019; 65(2): 30–38.
  18. Tuggey JM, Delmastro M, Elliott MW. The effect of mouth leak and humidification during nasal non-invasive ventilation. Respir Med. 2007; 101(9): 1874–1879.
  19. Bates-Jensen BM, McCreath HE, Pongquan V. Subepidermal moisture is associated with early pressure ulcer damage in nursing home residents with dark skin tones: pilot findings. J Wound Ostomy Continence Nurs. 2009; 36(3): 277–284.
  20. Pilch D, Kowalski A, Wieder-Huszla S, et al. Nursing problems of patients receiving home mechanical ventilation. JPHNMR. 2015; 1: 26–31.
  21. Krajnik M, Malec-Milewska M, Wordliczek J. Chory na nowotwór. Kompendium leczenia somatycznych objawów towarzyszących. Medical Education, Warszawa 2015.
  22. Zarei S, Carr K, Reiley L, et al. A comprehensive review of amyotrophic lateral sclerosis. Surg Neurol Int. 2015; 6: 171.
  23. Rahnemai-Azar A. Percutaneous endoscopic gastrostomy: Indications, technique, complications and management. World Journal of Gastroenterology. 2014; 20(24): 7739.
  24. Karwowska K, Kunecki M, Zmarzły A. Domowe żywienie dojelitowe pacjentów dorosłych. Conlinuo, Wrocław 2016.
  25. Sobotka L, Kłęk S, Korta T, Łyszkowska M. Podstawy żywienia klinicznego. Scentifica, Kraków 2013.
  26. Garuti G, Rao F, Ribuffo V, et al. Sialorrhea in patients with ALS: current treatment options. Degener Neurol Neuromuscul Dis. 2019; 9: 19–26.
  27. Bhatia KP, Münchau A, Brown P. Botulinum toxin is a useful treatment in excessive drooling in saliva. J Neurol Neurosurg Psychiatry. 1999; 67(5): 697.
  28. Mato A, Limeres J, Tomás I, et al. Management of drooling in disabled patients with scopolamine patches. Br J Clin Pharmacol. 2010; 69(6): 684–688.



Palliative Medicine in Practice