Factors Affecting The Length Of Stay In Amyotrophic Lateral Sclerosis In Palliative Care

-

Gülhan Sarıçam

https://doi.org/10.16919/bozoktip.784324

Abstract

Aim: Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that progresses with the degeneration of upper and lower motor neurons. In our study, we aimed to investigate the effects of demographic characteristics and symptoms of patients hospitalized in our palliative care center (PCC) with ALS on length of stay (LOS).

Materials and Methods: 47 patients were included in this retrospective study. The ages, sexes, diagnosis times, LOS in PCC, percutaneous endoscopic gastrostomy (PEG), tracheostomy, pressure ulcer (PU), discharge conditions and symptoms of the patients included in the study were compared. The diagnosis of insomnia and depression were made using the Beck Depression Inventory II (BDI-II) and Athens Insomnia Scale (AIS).
Results: The mean age of the patients was 56.55 years; the average length of stay was 50.55 days. All patients had a tracheostomy, 95.7% had PEG, and 55.3% had PU. 66% of the patients had insomnia, 61.7% had depression and all had pain, and the discharge status of 21.3% was exitus. We found that the length of stay was significantly longer in patients with symptoms of depression and insomnia among the patients we followed up in PCC. (p=0.049, p=0.014)
Conclusions: Diagnosis and treatment of symptoms such as depression, insomnia and pain in patients with ALS who are followed up in palliative care should be timely and adequate support should be provided. We think that early access to PC, timely recognition of symptoms and good management of patients diagnosed with ALS will increase the quality of life of patients.

Keywords

Amyotrophic lateral sclerosis, Palliative care, Length of stay

Supporting Institution

yok

Thanks

The authors would like to thank Ömer Kaplan for his statistical contribution to this paper.

Palyatif Bakımda Amyotrofik Lateral Skleroz’da Yatış Süresini Etkileyen Faktörler

Abstract

Amaç: Amyotrofik lateral skleroz (ALS), üst ve alt motor nöronların dejenerasyonu ile seyreden ilerleyici bir nörodejeneratif hastalıktır. Çalışmamızda palyatif bakım merkezimize (PBM), ALS tanısı ile yatırılan hastaların demografik özelliklerinin ve semptomlarının yatış sürelerine etkilerini araştırmayı amaçladık.
Gereç ve Yöntem: Bu retrospektif çalışmaya 47 hasta dahil edildi. Çalışmaya alınan hastaların yaşları, cinsiyetleri, tanı süreleri, yatış süreleri, perkütan endoskobik gastrostomi (PEG), trakeostomi, basınç ülseri (BÜ), çıkış durumları ve semptomları karşılaştırıldı. Uykusuzluk ve depresyon tanısı Beck Depresyon Envanteri II (BDE-II) ve Atina Uykusuzluk Ölçeği (AUÖ) kullanılarak konuldu.
Bulgular: Hastaların yaş ortalaması 56,55 yıl, hastanede yatış süreleri ortalama 50,55 gündü. Hastaların tamamında trakeostomi, %95,7’sinde PEG, %55,3’ünde BÜ vardı. Hastaların %66’sında uykusuzluk, %61,7’sinde depresyon ve tamamında ağrı vardı ve %21,3’nün çıkış durumu exitustu. PCC de takip ettiğimiz hastalardan depresyon ve uykusuzluk semptomu olan hastaların yatış sürelerinin anlamlı derecede daha uzun olduğunu saptadık. (p = 0,049, p = 0,014)
Sonuç: Palyatif bakımda izlenen ALS tanılı hastaların depresyon, uykusuzluk, ağrı gibi semptomlarının tanı ve tedavisi zamanında yapılmalı, hastalara yeterli destek sağlanmalıdır. ALS tanısı alan hastaların erken dönemde palyatif bakıma erişmeleri, semptomların zamanında tanınması ve iyi yönetilmesinin hastaların yaşam kalitesini artıracağını düşünüyoruz.

Keywords

Amyotrofik lateral skleroz, Palyatif bakım, Yatış süresi

References

• REFERENCES 1. Rowland LP, Shneider NA. Amyotrofik Lateral skleroz. N Engl J Med. 2001; 344 (22):1688-1700.
• 2. Radunovic A, Annane D, Rafiq MK, Brassington R, Mustfa N. Mechanical ventilation for amyotrophic lateral sclerosis/motor neuron disease. Cochrane Database Syst Rev. 2017;10:Cd004427. Doi:10,1002/14651858,CD004427.pub4
• 3. Miller RG, Jackson CE, Kasarskis EJ, England JD, Forshew D, W Johnston W et al. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/ behavioral impairment (an evidence-based review): report of the quality standards subcommittee of the American Academy of Neurology. Neurology. 2009;73(15):1227-33.
• 4. Lau FS, Brennan FP, Gardiner MD. Multidisciplinary management of motor neurone disease. Aust J Gen Pract. 2018;47(9):593-97.
• 5. Ng L, Khan F, Mathers S. Multidisciplinary care for adults with amyotrophic lateral sclerosis or motor neuron disease. Cochrane Database Syst Rev. 2009; 7(4):CD007425. Doi:10.1002/14651858.CD007425.pub2
• 6. Andersen PM, Abrahams S, Borasio GD, Carvalho MD, Chio A, Damme PV, et al. EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS)–revised report of an EFNS task force. Eur J Neurol. 2012;19(3):360–75.
• 7. David J. Oliver. Palliative care in motor neurone disease: where are we now? Palliat Care. 2019;12:1178224218813914.
• 8. Brooks BR, Miller RG, Swash M, Munsat TL. World Federation of Neurology Research Group on Motor Neuron Diseases. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph. Lateral Scler. Other Motor Neuron Disord. 2000;1(5):293–99.
• 9. American Psychiatric Association. American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders. 1994; 4th ed.
• 10. Soldatos CR, Dikeos DG, Paparrigopoulos TJ. Athens Insomnia Scale: validation of an instrument based on ICD-10 criteria. J Psychosom Res. 2000;48(6):555– 60.
• 11. McCormack HM, Horne DJ, Sheather S. Clinical applications of visual analogue scales: a critical review. Psychol Med. 1988;18(4):1007–19.
• 12. Aicher B, Peil H, Peil B, HC Diener. Pain measurement: Visual Analogue Scale (VAS) and Verbal Rating Scale (VRS) in clinical trials with OTC analgesics in headache. Cephalalgia. 2012;32(3):185–97. Doi:10.1177/03331024111430856
• 13. Abhinav K, Stanton B, Johnston C, Hardstaff J, Orrell RW, Howard R et al. Amyotrophic lateral sclerosis in South-East England: A population-based study. The South-East England register for amyotrophic lateral sclerosis (SEALS Registry) Neuroepidemiology. 2007;29(1-2):44–8.
• 14. Logroscino G , Traynor BJ, Hardiman O. Incidence of Amyotrophic Lateral Sclerosis in Europe. Neurol Neurosurg Psychiatry. 2010;81(4):385-90.
• 15. Borasio GD, Voltz R, Miller RG. Palliative care in amyotrophic lateral sclerosis. Neurologic Clinics. 2001;19(4):829–47. Doi:10.1007/PL00007719
• 16. Galvin M, Madden C, Maguire S, Heverin M, Vajda A, Staines A, et al. Patient journey to a specialist amyotrophic lateral sclerosis multidisciplinary clinic: an exploratory study. BMC Health Serv Res. 2015;15:571.
• 17. Bourke SC, Tomlinson M, Williams TL, Bullock RE, Shaw PJ, Gibson GJ. Effects of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: a randomised controlled trial. Lancet Neurol. 2006; 5(2):140–47.
• 18. Tagami M, Kimura F, Nakajima H, Ishida S , Fujiwara S , Doi Y, et al. Tracheostomy and invasive ventilation in Japanese ALS patients: Decision-making and survival analysis: 1990-2010. Journal of the Neurological Sciences. 2014; 344(1-2):158–64.
• 19. Cui F, Sun L, Xiong J, Li J, Zhao Y, Huang X. Therapeutic effects of percutaneous endoscopic gastrostomy on survival in patients with amyotrophic lateral sclerosis: A meta-analysis. PLoS One. 2018;13(2):e0192243. 20. Health Quality O. Pressure ulcer prevention: an evidence-based analysis. Ont Health Technol Assess Ser. 2009;9(2):1–104
• 21. Chio A, Canosa A, Gallo Set, Moglia C, Ilardi A, Cammarosano S, et al. Pain in amyotrophic lateral sclerosis: a population-based controlled study. Eur J. Neurology. 2012;19(4):551-55.
• 22. Borasio GD, Voltz R. Palliative care in amyotrophic lateral sclerosis. J. Neurol. 1997;244:11-17.
• 23. Kurt A, Nijboer F, Matuz T, Kubler A. Depression and anxiety in individuals with amyotrophic lateral sclerosis: epidemiology and management. CNS Drugs. 2007;21:279-91.
• 24. Roos E, Mariosa D , Ingre C. Depression in Amyotrophic Lateral Sclerosis Neurology. 2016;86(24):2271-7.
• 25. Boentert M. Sleep disturbances in patients with amyotrophic lateral sclerosis: current perspectives. Nat Sci Sleep. 2019;11:97–111.
• 26 Panda S, Gourie-Devi M, Sharma A. Sleep disorders in amyotrophic lateral sclerosis: a questionnaire-based study from India. Neurol India. 2018;66(3):700–8.
• 27 Pizzimenti A, Aragona M, Onesti E, Inghilleri M. Depression, Pain and Quality of Life in Patients With Amyotrophic Lateral Sclerosis: A Cross-Sectional Study. Funct Neurol. 2013;28(2):115-9.
• 28 Leigh PN, Abrahams S, Al-Chalabi A, Ampong M, Goldstein L, Johnson J, et al. The management of motor neurone disease. J Neurol Neurosurg Psychiatry. 2003;74(4):iv32–iv47.
• 29 Gruis KL, Lechtzin N. Respiratory therapies for amyotrophic lateral sclerosis: A primer. Muscle Nerve. 2012;46(3):313–31.
• 30 Karam CY, Paganoni S, Joyce N, Carter GT, Bedlack R, et al. Palliative Care Issues in Amyotrophic Lateral Sclerosis: An Evidenced-Based Review. Am J Hosp Palliat Care. 2016;33(1):84-92