The Dyspnea-ALS-Scale (DALS-15) optimizes individual treatment in patients with amyotrophic lateral sclerosis (ALS) suffering from dyspnea.
Amyotrophic lateral sclerosis
Dyspnea assessment
Motor neuron disease
Non-invasive ventilation
Patient-reported outcome measure
Pulmonary function tests
Symptom management
Journal
Health and quality of life outcomes
ISSN: 1477-7525
Titre abrégé: Health Qual Life Outcomes
Pays: England
ID NLM: 101153626
Informations de publication
Date de publication:
03 Jun 2019
03 Jun 2019
Historique:
received:
06
03
2019
accepted:
28
05
2019
entrez:
5
6
2019
pubmed:
5
6
2019
medline:
16
7
2019
Statut:
epublish
Résumé
Dyspnea is frequent in amyotrophic lateral sclerosis (ALS) and one of the most bothersome symptoms. The recently developed Dyspnea-ALS-Scale (DALS-15) is a disease-specific patient-reported outcome to detect and quantify dyspnea. To analyze in a case-based approach the diagnostic and clinical implications and the benefit of the DALS-15 for individual patients in daily clinical routine. Dyspnea was assessed by the 15-item comprising DALS-15 in two patients with ALS. Spirometry was performed and blood gases were analyzed. Results were evaluated in the clinical context of the respective patients. In one patient the presence of dyspnea detected by the DALS-15 indicated noninvasive ventilation (NIV) although forced vital capacity (FVC) and blood gas analysis were well preserved. After NIV implementation, the DALS-15 was helpful to determine the patient's need for medication, the timing of NIV titration and the adaptation of NIV sessions. In another patient, who was anarthric and no longer able to perform spirometry due to severe bulbar impairment, the DALS-15 allowed a standardized assessment of dyspnea-related distress independently of bulbar dysfunction. The DALS-15 provides a deeper insight into the respiratory status of individual patients. It helps to diagnose respiratory impairment in patients in whom NIV should be considered although FVC and blood gas results do not reveal indication for NIV. It is also valuable for the guidance of patients in later stages of respiratory impairment when NIV is already implemented, and in patients with severe bulbar dysfunction. The DALS-15 can improve specific symptom management and coordination of care and therefore has the potential to optimize individual treatment in ALS patients with dyspnea.
Sections du résumé
BACKGROUND
BACKGROUND
Dyspnea is frequent in amyotrophic lateral sclerosis (ALS) and one of the most bothersome symptoms. The recently developed Dyspnea-ALS-Scale (DALS-15) is a disease-specific patient-reported outcome to detect and quantify dyspnea.
OBJECTIVES
OBJECTIVE
To analyze in a case-based approach the diagnostic and clinical implications and the benefit of the DALS-15 for individual patients in daily clinical routine.
METHODS
METHODS
Dyspnea was assessed by the 15-item comprising DALS-15 in two patients with ALS. Spirometry was performed and blood gases were analyzed. Results were evaluated in the clinical context of the respective patients.
RESULTS
RESULTS
In one patient the presence of dyspnea detected by the DALS-15 indicated noninvasive ventilation (NIV) although forced vital capacity (FVC) and blood gas analysis were well preserved. After NIV implementation, the DALS-15 was helpful to determine the patient's need for medication, the timing of NIV titration and the adaptation of NIV sessions. In another patient, who was anarthric and no longer able to perform spirometry due to severe bulbar impairment, the DALS-15 allowed a standardized assessment of dyspnea-related distress independently of bulbar dysfunction.
CONCLUSION
CONCLUSIONS
The DALS-15 provides a deeper insight into the respiratory status of individual patients. It helps to diagnose respiratory impairment in patients in whom NIV should be considered although FVC and blood gas results do not reveal indication for NIV. It is also valuable for the guidance of patients in later stages of respiratory impairment when NIV is already implemented, and in patients with severe bulbar dysfunction. The DALS-15 can improve specific symptom management and coordination of care and therefore has the potential to optimize individual treatment in ALS patients with dyspnea.
Identifiants
pubmed: 31159830
doi: 10.1186/s12955-019-1167-0
pii: 10.1186/s12955-019-1167-0
pmc: PMC6547457
doi:
Types de publication
Journal Article
Validation Study
Langues
eng
Sous-ensembles de citation
IM
Pagination
95Références
Amyotroph Lateral Scler. 2007 Feb;8(1):36-41
pubmed: 17364434
Brain. 2001 Oct;124(Pt 10):2000-13
pubmed: 11571218
J Neurol Sci. 2000 Nov 1;180(1-2):86-93
pubmed: 11090871
Muscle Nerve. 2018 Jan;57(1):20-24
pubmed: 28561886
J Neurol Neurosurg Psychiatry. 2011 Aug;82(8):853-4
pubmed: 20562391
Respir Med. 2018 Dec;145:1-7
pubmed: 30509697
Respir Med. 2019 Jul - Aug;154:116-121
pubmed: 31234039
J Pain Symptom Manage. 2018 Nov;56(5):736-745.e2
pubmed: 30145215
Lancet Neurol. 2007 Oct;6(10):913-25
pubmed: 17884681
Eur J Neurol. 2008 May;15(5):445-50
pubmed: 18355309
Thorax. 2013 Apr;68(4):385-6
pubmed: 22843559
J Neurol Sci. 1999 Oct 31;169(1-2):13-21
pubmed: 10540002
J Neurol. 2013 Sep;260(9):2242-55
pubmed: 23736973
Am J Respir Crit Care Med. 2017 Jan 1;195(1):86-95
pubmed: 27494149
Arthritis Rheum. 2007 Dec 15;57(8):1358-62
pubmed: 18050173
Eur J Neurol. 2009 Mar;16(3):353-9
pubmed: 19364363
J Neurol Neurosurg Psychiatry. 2016 Sep;87(9):1022-6
pubmed: 27010615
Neurology. 1993 Jul;43(7):1316-22
pubmed: 8327132
Eur J Neurol. 2012 Mar;19(3):360-75
pubmed: 21914052
Thorax. 1971 Sep;26(5):579-84
pubmed: 5134058
NeuroRx. 2004 Apr;1(2):273-83
pubmed: 15717028
Eur Respir J. 2005 Aug;26(2):319-38
pubmed: 16055882
Br J Dis Chest. 1985 Jul;79(3):267-71
pubmed: 4015957
Lancet Neurol. 2006 Feb;5(2):140-7
pubmed: 16426990
Amyotroph Lateral Scler Frontotemporal Degener. 2014 Sep;15(5-6):392-7
pubmed: 25008979