#MDA2021 – Respiratory Difficulties Can Greatly Affect Patients’ Daily Independence

Marta Figueiredo PhD avatar

by Marta Figueiredo PhD |

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Editor’s note: The ALS News Today team is providing in-depth coverage of the 2021 MDA Virtual Clinical and Scientific Conference, March 15–18. Go here to read the latest stories from the conference.

Respiratory symptoms in people with amyotrophic lateral sclerosis (ALS) significantly affect their ability to independently perform daily tasks, according to a survey funded by Mitsubishi Tanabe Pharma America (MTPA).

“As part of our commitment to patients and their caregivers, MTPA wanted to explore how different disease symptom progression impacts an ALS patients’ ability to independently perform daily activities, such as cleaning, housework, cooking and traveling outside the home,” Gustavo A. Suarez Zambrano, MD, vice president of medical affairs at MTPA, said in a press release.

In addition to suggesting that “respiratory symptoms had a greater impact on patients’ ability to rely less on help from others,” Zambrano said, the survey showed that “patients needing significant assistance with daily activities had more hospitalizations, falls and poorer emotional health.”

The data highlight that treatments delaying or reducing respiratory symptoms in ALS patients may prolong their independence.

The findings were presented in a poster, “Symptom Burden and Loss of Independence in Activities of Daily Living Among Patients with Amyotrophic Lateral Sclerosis,” at the 2021 MDA Virtual Clinical and Scientific Conference, March 15–18.

ALS is a neurodegenerative disease associated with motor and non-motor symptoms that contribute to patients’ functional and emotional decline, affecting their ability to perform activities of daily living (ADLs) and reducing their quality of life.

As such, “there is an invariable need for caregiver assistance as ALS progresses,” the researchers wrote.

Conducted by Adelphi Real World, the MTPA-funded survey aimed to evaluate the impact of ALS symptoms on patients’ capability to perform ADLs independent of a caregiver and how ADL dependence affected other outcomes.

The U.S. survey was completed by 21 neurologists for 166 ALS patients (105 men and 61 women), with a mean average age of 58.6 years and a mean average time of 1.4 years since diagnosis.

Participating neurologists submitted de-identified patient data about demographics, symptoms, ability to perform daily life activities, hospitalizations, patient-reported falls, and emotional well-being to a study database. Data were collected from July to November 2020.

Results showed that 90 (54%) patients were dependent on a caregiver to complete at least one daily life activity. These individuals were generally older, had more symptoms and greater disease severity, and more often lived in a hospice, a nursing home, or an assisted living residence than ADL-independent patients.

Care-dependent ADLs were mostly physical in nature, and the most commonly reported included cleaning and housework, gardening, preparing meals/cooking, and shopping.

Notably, the number of respiratory symptoms were found to be significantly associated with a three times higher likelihood of ADL dependence. No significant links were found for motor/bulbar, behavioral, or cognitive symptoms. Of note, bulbar function refers to the ability to chew, swallow, and speak.

Patients needing significant assistance to complete at least one daily life activity had a greater number of falls (mean of 1.2 vs. 0.5) and were more likely to have been hospitalized (28.1% vs. 4.7% of patients) in the prior year, compared with ADL-independent patients.

In addition, a significantly greater proportion of ADL-dependent patients had moderate to severe emotional problems (56% vs. 22%) and had expressed suicidal thoughts (19% vs. 8%).

ADL-dependent patients needed significantly more hours of professional and non-professional caregiver assistance, and greater use of mobility and communication aids, as well as therapeutic and ventilatory support, than ADL-independent patients.

Given that the survey was not based on a truly random population of neurologists and patients, its results may not be generalized to all ALS patients, and further studies are needed to confirm these findings, the researchers noted.

“Our findings suggest that compared with other symptoms, respiratory symptoms had a greater impact on patients’ ability to independently perform ADLs, and ADL-dependent patients had more hospitalizations, falls, and poorer emotional health,” the researchers wrote.

“Treatments that delay or minimize respiratory symptoms could allow ALS patients to be independent for longer,” they concluded.