From the Guidelines
Yes, ALS (Amyotrophic Lateral Sclerosis) often causes weight loss in patients, which is associated with faster disease progression and reduced survival rates. This weight loss occurs due to several factors related to the disease progression, including muscle atrophy, dysphagia (difficulty swallowing), increased metabolic demands, and fatigue. According to the ESPEN guideline on clinical nutrition in neurology 1, weight loss of more than 5% at diagnosis compared to usual weight increases the risk of death by 14-30%. Additionally, a weight loss of 10% at diagnosis entails an increase in the risk of death of 45% 1.
The causes of weight loss in ALS patients are multifactorial, including:
- Muscle atrophy, as the degeneration of motor neurons leads to muscle wasting throughout the body, reducing overall body mass
- Dysphagia, which makes eating challenging and reduces caloric intake
- Increased metabolic demands, as some research suggests ALS patients may have hypermetabolism, burning more calories at rest than healthy individuals
- Fatigue and weakness, which can make the physical act of eating exhausting, further limiting nutrition
Nutritional management is therefore a critical part of ALS care, often involving high-calorie diets, nutritional supplements, and eventually feeding tubes (PEG tubes) when swallowing becomes too difficult. The ESPEN guideline recommends that patients with muscular fatigue and long-lasting meals should be advised to fractionate and enrich their meals with energy or deficient nutrients, and oral nutritional supplementation should be recommended if weight loss progresses 1.
Healthcare providers typically monitor weight closely in ALS patients and intervene early with nutritional support strategies. Enteral nutrition (EN) may positively affect some aspects of quality of life, and the pros and cons of EN should be adequately discussed with the patient, family, and caregivers when EN is proposed 1. Overall, early nutritional intervention is crucial to maintain good nutritional status and reduce mortality rates in ALS patients.
From the Research
Weight Loss in ALS Patients
- Weight loss is a common feature in patients with Amyotrophic Lateral Sclerosis (ALS), with 56.3% of patients experiencing weight loss 2.
- Weight loss in ALS patients can have a negative impact on quality of life and is associated with a shorter survival rate 2.
- The causes of weight loss in ALS patients are not always attributed to dysphagia, with 38.2% of patients experiencing significant weight loss without suffering from dysphagia 2.
Loss of Appetite and Weight Loss
- Loss of appetite is a contributor to weight loss in ALS patients, with 53.2% of patients experiencing loss of appetite 3.
- Anxiety and/or depression can contribute to loss of appetite in ALS patients, which can lead to greater weight loss 3.
- Severe loss of appetite is common in ALS patients, with approximately half of patients suffering from severe loss of appetite, which can increase to nearly two-thirds after 6 months 4.
Dysphagia and Weight Loss
- Dysphagia can result in aspiration, malnutrition, and mortality in ALS patients, making it essential to identify patients at risk of developing swallowing complications 5.
- A clinical prediction model, such as the ALS dysphagia risk score, can be used to identify patients with ALS at high risk for self-reported dysphagia development 5.
- Managing dysphagia in ALS patients requires a comprehensive approach, including compensatory strategies, energy conservation, and patient and caregiver education and counseling 6.