Thick Mucus in ALS: A Mixed-Method Study on Associated Factors and Its Impact on Quality of Life of Patients and Caregivers.

Sarah K Bublitz,Jens Geiseler,Alexander Hapfelmeier,Eva Mie,Andrea Sylvia Winkler,Maria Wasner,Stefan Lorenzl

doi:10.3390/brainsci12020252

Abstract

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.

Highlights

Amyotrophic lateral sclerosis (ALS) is a progressive and devastating neurodegenerative disease with a median survival of three years from the time of diagnosis [1]
We asked the following questions using Visual Analogue Scales (VAS); the first three questions were only presented to the patient group: How intense is mucus secretion? How much are you bothered by mucus secretion? How much is your quality of life influenced by mucus secretion? How would you rate your level of anxiety?
A main focus of our qualitative pilot study was on the problem-centred interviews which we performed to analyse psychosocial aspects of thick mucus accumulation in ALS

Summary

Introduction

Amyotrophic lateral sclerosis (ALS) is a progressive and devastating neurodegenerative disease with a median survival of three years from the time of diagnosis [1]. Symptoms include non-motor features such as pain [2], autonomic dysfunction [3], depression and excessive oral secretions including thin saliva and thick, viscous mucus. Studies in other neurodegenerative disorders, such as Parkinson’s disease, show that non-motor signs have a strong impact on the quality of life of affected individuals [4] and relatives. Since there is currently no curative therapeutic option for ALS, multidisciplinary palliative care is a central approach to alleviate symptoms, which affect patients and impact caregiver burden. Oral secretion management is a challenge for patients and caregivers. It is highly distressing and socially stigmatizing, but the ability to clear secretions from the upper airways is a major factor of tolerance and effectiveness of non-invasive ventilation (NIV) [6,7]. It has been shown that a high score in the Oral Secretion Scale (OSS), reflecting the absence of oral secretions, facilitates NIV initiation and that NIV tolerance itself is an important prognostic factor of survival [8]

Methods

Results

Conclusion