Efficacy of early integration of palliative care in amyotrophic lateral sclerosis : A Randomised Control Trial

Amyotrophic lateral sclerosis (ALS) previously known as Lou Gehrig’s disease is a progressive neurodegenerative disease that primarily affects motor neurons, in the brain and spinal cord, which are crucial for transmitting signals to muscles which results in loss of voluntary muscle control. Incidence in the Indian setting: 1.5–2.7 cases per 100,000 people annually. Prevalence of 3–5 cases per 100,000 people at any given time. Despite the growing recognition of the importance of palliative care for individuals with ALS, there are significant gaps in the data concerning their care needs. There is a lack of longitudinal studies that track the effectiveness of palliative interventions throughout the progression of the disease. Most existing research focuses on short-term outcomes, making it difficult to evaluate long-term care requirements and results, particularly for those who live with ALS for many years. Additionally, there is limited solid evidence on the most effective strategies for managing the full range of ALS symptoms. Research on various models of palliative care delivery, which could enhance quality of life, alleviate symptoms, and improve survival, is also insufficient. Moreover, there is a need for more information on caregiver burden and ways to ensure they receive adequate support. Communication regarding prognosis, treatment goals, and end-of-life preferences continues to be a significant challenge.