Thick Mucus in ALS: A Mixed-Method Study on Associated Factors and Its Impact on Quality of Life of Patients and Caregivers
In this explorative mixed-method pilot study, we set out to have a closer look at the largely under-recognized and under-investigated symptom of thick mucus in patients with ALS and its impact on patients and relatives. Thick mucus is a highly distressing symptom for both patients and caregivers. It...
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| Format: | Artykuł |
| Język: | English |
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MDPI AG
2022-02-01
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| Seria: | Brain Sciences |
| Hasła przedmiotowe: | |
| Dostęp online: | https://www.mdpi.com/2076-3425/12/2/252 |
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| author | Sarah K. Bublitz Eva Mie Maria Wasner Alexander Hapfelmeier Jens Geiseler Stefan Lorenzl Andrea Sylvia Winkler |
| author_facet | Sarah K. Bublitz Eva Mie Maria Wasner Alexander Hapfelmeier Jens Geiseler Stefan Lorenzl Andrea Sylvia Winkler |
| author_sort | Sarah K. Bublitz |
| collection | DOAJ |
| description | In this explorative mixed-method pilot study, we set out to have a closer look at the largely under-recognized and under-investigated symptom of thick mucus in patients with ALS and its impact on patients and relatives. Thick mucus is a highly distressing symptom for both patients and caregivers. It complicates the use of non-invasive ventilation and is therefore an important prognostic factor of survival. Methods: In our preliminary study, we used a cross-sectional design, including ten ALS patients with thick mucus who were matched to ten ALS patients without thick mucus. Lung function tests and laboratory and sputum analysis were performed and questionnaires administered in order to determine associated factors of thick mucus accumulation. In a qualitative study using semi-structured interviews, we analysed the impact of thick mucus on patients and caregivers. Results: Reduced respiratory parameters as well as a higher degree of bulbar impairment were associated with the presence of thick mucus. Quality of life of patients and caregivers was strongly impaired by thick mucus accumulation. Conclusions: Thick mucus in patients with ALS has a strong impact on quality of life. Reduced cough flow and severely impaired bulbar function appear to be indicative parameters. We suggest that healthcare providers actively explore the presence of thick mucus in their patients and that it becomes included in commonly used screening tools. |
| first_indexed | 2024-03-09T22:26:47Z |
| format | Article |
| id | doaj.art-2ba8c618a0194deba63e38d2ad0ccdf4 |
| institution | Directory Open Access Journal |
| issn | 2076-3425 |
| language | English |
| last_indexed | 2024-03-09T22:26:47Z |
| publishDate | 2022-02-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Brain Sciences |
| spelling | doaj.art-2ba8c618a0194deba63e38d2ad0ccdf42023-11-23T19:03:59ZengMDPI AGBrain Sciences2076-34252022-02-0112225210.3390/brainsci12020252Thick Mucus in ALS: A Mixed-Method Study on Associated Factors and Its Impact on Quality of Life of Patients and CaregiversSarah K. Bublitz0Eva Mie1Maria Wasner2Alexander Hapfelmeier3Jens Geiseler4Stefan Lorenzl5Andrea Sylvia Winkler6Palliative Care Research Hub at the Institute of Nursing Science and Practice, Paracelsus Medical University, 5020 Salzburg, AustriaGeneral Practice, Georgenstr. 39, 80331 Munich, GermanyCatholic University of Applied Sciences, 81667 Munich, GermanyInstitute of General Practice and Health Services Research, School of Medicine, Technical University of Munich, 81667 Munich, GermanyDepartment of Pneumology, Sleep and Ventilation Therapy, Klinikum Vest, Paracelsus-Klinik Marl, 45657 Recklinghausen, GermanyPalliative Care Research Hub at the Institute of Nursing Science and Practice, Paracelsus Medical University, 5020 Salzburg, AustriaDepartment of Neurology, Center for Global Health, Klinikum Rechts der Isar, Technical University of Munich, 81675 Munich, GermanyIn this explorative mixed-method pilot study, we set out to have a closer look at the largely under-recognized and under-investigated symptom of thick mucus in patients with ALS and its impact on patients and relatives. Thick mucus is a highly distressing symptom for both patients and caregivers. It complicates the use of non-invasive ventilation and is therefore an important prognostic factor of survival. Methods: In our preliminary study, we used a cross-sectional design, including ten ALS patients with thick mucus who were matched to ten ALS patients without thick mucus. Lung function tests and laboratory and sputum analysis were performed and questionnaires administered in order to determine associated factors of thick mucus accumulation. In a qualitative study using semi-structured interviews, we analysed the impact of thick mucus on patients and caregivers. Results: Reduced respiratory parameters as well as a higher degree of bulbar impairment were associated with the presence of thick mucus. Quality of life of patients and caregivers was strongly impaired by thick mucus accumulation. Conclusions: Thick mucus in patients with ALS has a strong impact on quality of life. Reduced cough flow and severely impaired bulbar function appear to be indicative parameters. We suggest that healthcare providers actively explore the presence of thick mucus in their patients and that it becomes included in commonly used screening tools.https://www.mdpi.com/2076-3425/12/2/252amyotrophic lateral sclerosisthick mucusoral secretionnon-motor signsquality of lifecaregiver burden |
| spellingShingle | Sarah K. Bublitz Eva Mie Maria Wasner Alexander Hapfelmeier Jens Geiseler Stefan Lorenzl Andrea Sylvia Winkler Thick Mucus in ALS: A Mixed-Method Study on Associated Factors and Its Impact on Quality of Life of Patients and Caregivers Brain Sciences amyotrophic lateral sclerosis thick mucus oral secretion non-motor signs quality of life caregiver burden |
| title | Thick Mucus in ALS: A Mixed-Method Study on Associated Factors and Its Impact on Quality of Life of Patients and Caregivers |
| title_full | Thick Mucus in ALS: A Mixed-Method Study on Associated Factors and Its Impact on Quality of Life of Patients and Caregivers |
| title_fullStr | Thick Mucus in ALS: A Mixed-Method Study on Associated Factors and Its Impact on Quality of Life of Patients and Caregivers |
| title_full_unstemmed | Thick Mucus in ALS: A Mixed-Method Study on Associated Factors and Its Impact on Quality of Life of Patients and Caregivers |
| title_short | Thick Mucus in ALS: A Mixed-Method Study on Associated Factors and Its Impact on Quality of Life of Patients and Caregivers |
| title_sort | thick mucus in als a mixed method study on associated factors and its impact on quality of life of patients and caregivers |
| topic | amyotrophic lateral sclerosis thick mucus oral secretion non-motor signs quality of life caregiver burden |
| url | https://www.mdpi.com/2076-3425/12/2/252 |
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