Emotional Challenges in ALS/MND: How common are anxiety and depression in patients and their families?

Receiving an ALS diagnosis can be a challenging and distressing experience, both for the patients and their family members. Adjusting to the news and adapting to the new lifestyle can be challenging and often gives rise to psychological symptoms such as anxiety and depression, which can affect both the patient and their carers. This study aims to examine the frequency of anxiety and depression in the patients and their relatives at the time of diagnosis and throughout the disease progression. Another goal is to find if there is any relation between the patient’s physical function and the occurrence of these symptoms.

Why is the study important?

• It is a prospective and longitudinal study meaning the same people are followed over time, beginning at diagnosis and following the same people over 2 years.
• It measures the frequency of both anxiety and depression in patients and their relatives using the widely used and trusted HADS scale.
• It uses ALS FRS-R, a standard tool to determine the loss of functions and see if the declining physical function relates to symptoms of anxiety and depression in the participants.

What did the authors do and how did they do it?

• The authors recruited 33 newly diagnosed patients and their relatives from 3 different hospitals in Sweden to participate in this study.
• The participants were evaluated immediately after diagnosis and were followed up regularly for two years at 1-3, 6, 12, 18 and 24 months.
• The Hospital Anxiety and Depression Scale (HADS) was used to assess anxiety and depression levels in the participants. It is a self-reported tool and was filled out separately by the participants.
• The revised Amyotrophic Lateral Sclerosis Functional and Rating Scale (ALS FRS-R) is a disease-specific severity score that measures the loss of function in people with ALS. It has a 0 to 4 rating system, with 0 indicating a complete loss of function and 4 indicating normal functioning.

The results show that anxiety is more common than depression among newly diagnosed patients and their relatives. It also suggests that relatives experience more symptoms of anxiety and depression than patients, both soon after diagnosis and throughout the illness. After diagnosis, 45% of patients and 58% of relatives experience anxiety, while only 13% of patients and 29% of relatives experience symptoms of depression.

Evaluation at different time points shows that while the symptoms of anxiety reduce in patients over time, depression scores remained the same. Conversely, anxiety and depression scores remained consistent in relatives, both after diagnosis and in the later stages of the disease. Despite these numbers, very few patients and relatives received treatments for either condition and those who did showed no positive change. Worsening of the patient’s physical functions added to the relative’s anxiety and depression, but it did not have any impact on the patient’s emotional well-being.

However, it should be noted that 17.2% of the Swedish general population experiences clinically significant depression (10.8%) or anxiety (14.7%). Women are more likely to experience depression (13%) and anxiety (18%) than men (8% and 11% respectively) for further information see the website link at the bottom of this summary.

What do the findings mean going forward for people with the disease?

ALS is a debilitating condition that doesn’t just affect the patient but also negatively impacts their carers and family members. As the disease progresses, it adds to the emotional burden of the family. This study has shown that both the patient and their relatives experience symptoms of anxiety and depression at some point throughout the illness. Identifying these symptoms and adopting a more holistic approach by offering psychological and social support can help the patient and their families to better adjust and adapt to the disease and provide more efficient care.

This study can be found at
https://www.sciencedirect.com/science/article/pii/S0022510X23022414?via%3Dihub 

Paper title
Symptoms of anxiety and depression in patients with Amyotrophic Lateral Sclerosis and their relatives during the disease trajectory

Author list
Birgitta Jakobsson Larsson, Karin Nordin, Ingela Nygren

Publication details including date of publication
Published in Journal of Neurological Sciences, Volume 455, Page 122780. Available at: https://doi.org/10.1016/J.JNS.2023.122780.

Johansson, R. et al. (2013) ‘Depression, anxiety and their comorbidity in the Swedish general population: point prevalence and the effect on health-related quality of life’, PeerJ, 1(1).

https://peerj.com/articles/98/

Readable Research is proud to be supported by Dr Rick Nelms, a biologist, educator, and artist who has Motor Neurone Disease. 

Rick paints without brushes using a smartphone, tablet or PC to create artwork determined to remain positive and keep creating art despite living with the condition. 

His latest artwork is based on this lay summary into research on the emotional challenges of MND visualised as a storm over the ocean. 

You can see it in detail, and read more about his inspiration, here >>