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Complexity of needs in amyotrophic lateral sclerosis (ALS) patients using the ENP-E scale in the north-eastern region of Spain
Published online by Cambridge University Press: 31 January 2024
Abstract
Objectives
This study aimed to explore the clinical characteristics of amyotrophic lateral sclerosis (ALS) patients in Spain’s north-eastern region, their inclusion in chronic care programmes, and their psychosocial and spiritual needs (PSNs).
Methods
A longitudinal descriptive study in adult patients with ALS. We analyzed clinical variables and participation in chronicity and PSNs assessment using the tool Psychosocial and Spiritual Needs Evaluation scale in end-of-life patients (ENP-E scale).
Results
81 patients (average age 65.6 ± 11.7) were studied. At the study’s outset, 29.7% employed non-invasive ventilation (NIV), increasing to 51.9% by its conclusion. Initial percutaneous endoscopic gastrostomy (PEG) utilization was 14.8%, rising to 35.85%. Chronic care programme participation was as follows: home care (24.7% initially, 50.6% end), palliative care (16% initially, 40.7% end), case management (13.6% initially, 50.6% end), and advance care planning registration (6.2% initially, 35.8% end). At study start, 47.8% of patients (n = 46) showed moderate-to-severe complexity in PSNs assessment using the ENP-E scale, without showing differences in age, sex, and time of evolution; whereas, on the evolutionary analysis, it was 75% (n = 24). A higher evolutionary complexity was observed in males <60 and >70 years, with no PEG and evolution of ALS of <2 and ≥5 years, and not included in chronicity programmes. When assessing concerns, physical pain and family aspects stand out in all measurements. Forty-eight percent of patients at study start and 71% at end of study showed external signs of emotional distress.
Significance of results
Most ALS patients showed a high degree of complexity and were not integrated in chronicity programmes. A “care path” is proposed to integrate ALS patients in these programmes and systematically assess their needs.
Keywords
- Type
- Original Article
- Information
- Copyright
- © The Author(s), 2024. Published by Cambridge University Press.
References
Al-Chalabi, A and Hardiman, O (2013) The epidemiology of ALS: A conspiracy of genes, environment and time. Nature Reviews Neurology 9(11), 617–628. doi:10.1038/nrneurol.2013.203CrossRefGoogle Scholar
Amblàs-Novellas, J, Murray, A, Espaluella, J, et al. (2016) Identifying patients with advanced chronic conditions for a progressive palliative care approach: A cross-sectional study of prognostic indicators related to end-of-life trajectories. BMJ Open 6(9), . doi:10.1136/bmjopen-2016-012340CrossRefGoogle ScholarPubMed
ATDOM Group (home care) of the Catalan Society of Family and Community Medicine (2003) Approach to home care. How does the Catalan public health system work on home care? Atención Primaria 31(8), 473–479. doi:10.1016/S0212-6567(03)70718-5Google Scholar
Barker, DJP and Rose, G (1992) Epidemiology in Medical Practice, 2nd edn, Masson-Salvat Medicine (eds), Natural history and prognosi. Barcelona: Ediciones científicas y técnicas, S.A, 115–116.Google ScholarPubMed
Bensimon, G, Lacomblez, L, Meininger, V, et al. (1994) A controlled trial of riluzole in amyotrophic lateral sclerosis. New England Journal of Medicine 330(9), 585–591. doi:10.1056/NEJM199403033300901CrossRefGoogle ScholarPubMed
Boult, C, Reider, L, Frey, K, et al. (2011) Early effects of “guided care” on the quality of health care for multimorbid older persons: A cluster-randomized controlled trial. Journal of Gerontology: Medical Sciences 66(3), 321–329. doi:10.1093/gerona/63.3.321Google Scholar
Brown, RH and Al-Chalabi, A (2016) Amyotrophic lateral sclerosis. New England Journal of Medicine 377(2), 162–172. doi:10.1056/NEJMra1603471CrossRefGoogle Scholar
Busquets, X (2001) Support teams and home care for terminal patients. Formación Médica Continuada 8(8), . doi:10.1016/S1134-2072(01)75468-0Google Scholar
Castro-Rodríguez, E, Azagra, R, Gómez-Batiste, X, et al. (2021) Amyotrophic lateral sclerosis (ALS) from primary care. Epidemiology and clinical-assistance characteristics. Aten Prim 53(10), . doi:10.1016/j.aprim.2021.102158Google Scholar
Catalonia Health Plan 2016–2020 Department of Health, Government of Catalonia. https://scientiasalut.gencat.cat/bitstream/handle/11351/4040/pla_salut_catalunya_2016_2020_2016_ang.pdf?sequence=5&isAllowed=y (accessed 05 March 2023).Google Scholar
Department of Health (2021) Catalonia’s chronic disease prevention and care program. Sociosanitary Master Plan. Strategic Primary Care Management. Conceptual bases and care model for frail, complex chronic (PCC) or advanced (MACA) patients. https://salutweb.gencat.cat/web/.content/_ambits-actuacio/Linies-dactuacio/Estrategies-de-salut/Cronicitat/Documentacio-cronicitat/arxius/catalan-model-care-en.pdf (accessed 05 March 2023)Google Scholar
Garcés, J and Ródenas, F (2015) Case management as a methodology for connecting health and social systems in Spain. Aten Prim 47(8), 482–489. doi:10.1016/j.aprim.2014.11.005CrossRefGoogle ScholarPubMed
Gómez-Batiste, X, Espinosa, J, Porta, J, et al. (2010) Models of care, organization and quality improvement for the care of advanced terminal patients and their families: The contribution of palliative care. Medicina Clínica (Barcelona) 135(2), 83–89. doi:10.1016/j.medcli.2010.02.015CrossRefGoogle ScholarPubMed
Gómez-Batiste, X, Martínez-Muñoz, M, Blay, C, et al. (2013) Identifying people with advanced chronic diseases and need for palliative care in health and social services: Development of the NECPAL CCOMS-ICO© instrument. Medicina Clínica (Barcelona) 140(6), 241–245. doi:10.1016/j.medcli.2012.06.027CrossRefGoogle Scholar
Hardiman, O, Van Den Berg, LH and Kiernan, MC (2011) Clinical diagnosis and management of amyotrophic lateral sclerosis. Nature Reviews Neurology 7(11), 639–649. doi:10.1038/nrneurol.2011.153CrossRefGoogle ScholarPubMed
Hobson, EV and McDermott, CJ (2016) Supportive and symptomatic management of amyotrophic lateral sclerosis. Nature Reviews Neurology 12(9), 526–538. doi:10.1038/nrneurol.2016.111CrossRefGoogle ScholarPubMed
Katzberg, HD and Benatar, M (2011) Enteral tube feeding for amyotrophic lateral sclerosis/motor neuron disease. Cochrane Database of Systematic Reviews (1), CD004030. doi:10.1002/14651858.CD004030.pub3CrossRefGoogle ScholarPubMed
Lasmarías, C, Loncan, P, Vila, L, et al. (2016) Catalan Model of Advance Care Planning. Conceptual Document. Department of Health, UVIC/ICO/CCOMS Palliative Care Chair, University of Vic.Google Scholar
Limón, E, Lasmarías, C and Blay, C (2018) Advance care planning: Feasibility and barriers to implementation. Formación Médica Continuada 25(5), 259–261. doi:10.1016/j.fmc.2018.02.001Google Scholar
Lynn, J and Adamson, DM (2003) Living Well at the End of Life: Adapting Health Care to Serious Chronic Illness in Old Age. Santa Monica, CA: RAND Corporation.Google Scholar
Marin, B, Boumediene, F, Logroscino, G, et al. (2017) Variation in worldwide incidence of amyotrophic lateral sclerosis: A metaanalysis. International Journal of Epidemiology 46(1), 57–74. doi:10.1093/ije/dyw061Google ScholarPubMed
Mateo-Ortega, D, Maté-Méndez, J, Ela, S, et al. (2019) Development of a tool to identify and assess psychosocial and spiritual needs in end-of-life patients: The ENP-E scale. Palliative and Supportive Care 17(4), 441–447. doi:10.1017/S1478951518000652CrossRefGoogle Scholar
Miller, RG, Mitchell, JD and Moore, DH (2012) Riluzole for amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND). Cochrane Database of Systematics Reviews (3), . doi:10.1002/14651858.CD001447.pub3CrossRefGoogle ScholarPubMed
Pradas, J, Puig, T, Rojas-Garcia, R, et al. (2013) Amyotrophic lateral sclerosis in Catalonia: A population based study. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 14(4), 278–283. doi:10.3109/21678421.2012.749915CrossRefGoogle ScholarPubMed