Countway Protocol Template (Scoping Review)

Amyotrophic Lateral Sclerosis (ALS) is a degenerative neurological condition characterized by a progressive loss of function, ultimately leading to death. As a multisystem disease, ALS affects various aspects of life, leading to a range of challenges, including physical, social, emotional, spiritual, and existential difficulties.

Due to the complexity of ALS, individuals living with the disease often face numerous and unmet biopsychosocial needs. Given this, the involvement of healthcare professionals with specialized training in palliative care is widely recognized as essential.

Palliative care not only addresses the symptoms of ALS but also plays a critical role in planning for future healthcare needs. The necessity of palliative care within the ALS community - including patients, caregivers, and healthcare providers - has been explored. As more initiatives addressing the palliative care needs of the ALS community have been published, an up-to-date comprehensive review will help keep the field informed.

The objective of this review is to analyze all surveys conducted within the ALS community (patients, caregivers, and providers) until 2024 to explore their perceived palliative care needs, identify existing gaps, and highlight research opportunities in this area.